Terrified and Losing Hope

Support Emotional Support CIDP
1

I have had Crohns Disease for 30 years and CIDP for three. IVig helped me in the past but I have always had very serious side effects. In July, I had my gallbladder removed and then had IVig the same week. I was very ill. My neuro said we would stop IVIg for a while. I stopped and felt pretty good for six weeks. I had lost 30 upounds but even started to eat again. My husband and I thought maybe I was in remission. Maybe I was misdiagnosed and never had CIDP at all. I was still recovering from the surgery so we couldnā€™t do much. Then, the numbness, burning and weakness came back. It came back with a vengence!

The nero started me back on IVIg but we knew I could not handle a loading dose of five days again so I was having 25G for two days. I got very sick so she added 50mg Solu Medrol iv prior to the infusions and this helped but the IVig was too low to beat back the symptoms. So she raised it to 30G for two days. Most of you know that isnā€™t a lot but during the second infusion, I had chest pain so bad I thought I would die. We slowed it down, I took more Benedryl and we were able to finish. As usual, I was extremely ill the next day and the chest pain returned. I went to the ER and when they ascertained I wasnā€™t having a heart attack, they sent me home. This is a trauma center and a hospital people from all over the world visit but they knew practically nothing about CIDP or IVig. The neuro resident was online looking up IVig side effects. Stopping IVig after my surgery is the biggest mistake I ever made because it stopped working. I should have told the doctor to find a way to lessen the side effects but I shouldnā€™t have stopped. Six months ago, my nurse and I were saying that I didnā€™t have any CIDP symptoms except maybe fatigue and if we could just stop the IVig side effects, I would be able to have a life again. Now, I am where I was three years ago when I was diagnosed, except I donā€™t have IVig to save me this time.

So now it has been six weeks since my last treatment. The doctor said I had two choices: switch brands and try a five day load up of IVig or try Methotrexate with 1,000 Solu Medrol until it kicks inā€¦IF it kicks in. I started the Methotrexate today. I can barely feel my hands and canā€™t feel my feet. I am so week I donā€™t know how long I will be able to get up to my second floor bedroom. I am terrified and losing hope. This disease has taken everything I love away from me. For three years, I have been too sick to walk my dogs, go to dinner with my husband or enjoy even the simplest of lifeā€™s pleasures. What is the point of living with nothing to look forward to except getting worse. I hate this disease. I hate that instead of me having IT, IT has me.

2

I'm so sorry you are going through this. I wish I had something profound to say, but I don't. The only way I have managed to keep my sanity through my struggle with CIDP is to modify my life. I now sleep on a ground floor bedroom so I don't have to do the stairs. Hubby is now in charge of laundry, my 16 yr old son does the grocery shopping and fills my car with gas and runs errands for me and my 18 yr old daughter helps cook when she can which isn't too often as she is a senior this year and is in school from 7AM till 930PM with all her extracurricular activities. Much of the time, I go to work with lent from bath towels on my scrubs and my fellow nurses help me de-lent with a lent roller and they go to the cafeteria for me to get me lunch when I am feeling to weak. Two of the hardest things for me to learn to do were asking for help from others and learning to say "NO". Since my husband works night shifts I often find myself eating a lot of cereal or yogurt for supper which means I really have to make my breakfasts count so I'll eat fruit and boiled eggs. I do believe my 16 yr old has become a regular at dinner time at his various friend's homes so on Fridays, I return the favor and allow him to either invite his friends over for delivery pizza or give them my ATM card and he treats them to fast food which is something he once thought he would never grow sick of, but there for a while, it was just him and me and God bless him, that boy can barely make mac n cheese. In the beginning of my CIDP journey, the doctor I work with kept telling me that I had to take baby steps and break everything down into small goals and just worry about the task at hand and to 'live in the moment'. I wish you patience, peace, and healing.

3

Dear DaC, thank you so much for taking the time to read my very long post and for your thorough answer. Itā€™s ironic that your treatment is almost exactly like mine, except for the IV benedryl. I have been on Gammunex for the entire three years and the doctor was thinking of switching to Gammaguard. Scary because she was quite clear that my reaction could be better, the same or even worse. That really scared me because I cannot imagine it being worse. The benedryl I took was just two 24mg pills and I would take them an hour before infusion and then every five hours for the next 48 hours. Same with Tylenol to ward off headaches. I was getting 50mg solu medroland and taking oral prednisone as well. All of that seemed to be helping a bit but the ivig was not strong enough and the minute we increased it KABAM!!! I am not sure what your ivig side effects are but mine were absolutely debilitating.

To be quuite graphic I would vomit this white foamy substance that felt like battery acid burning my mouth and throat. The vomitting would begin on the day after infusion and it was every half hour or so for days. I also had simultaneous diarrhea of the same burning substance. I once told my husband it felt as if my bones were melting and leaving my body as a poisen. I was not able to get out of bed for weeks, except for trips to the bathroom, and sometimes, the emergency room. I was not able to eat at all for two weeks after ivig because any food at all would lay on my stomach like a lump of poisen until it came back up. My bones, back and legs would scream in pain. All of this would happen for three weeks. I would be able to start eating a piece of toast here and there and then the three weeks would be up and it would begin all over again. No quality of life whatsoever for three very long years. The treatments would keep my symptoms in check but I guess that didnā€™t matter very much because i was in bed anyway. The past seven months, I have had CIDP symptoms and these ivig side effectsā€¦lose/lose. This solu medrol/Methotrexate combo has to help me with minimal side effects. Otherwise, I do not know what Iā€™ll do. i guess Iā€™ll have to switch to Gammaguard and pray. If that happens, I will have Dr add the benedryl IV to see if that helps. Thank you from the bottom of my heart for your answer and your support. I pray that you continue doing well woth your treatment. Andplease, no matter what dr says, do not stop IVig! If they want to check for possible remission, habe them space put your treatment. Stopping is the worse thing I have ever done. Joann



DazedandConfused said:

Doggymama,

I know how scary it is when your body jumps up and runs away from youā€¦the total feeling of ā€œloss of control over your own lifeā€ and the fear of the unknownā€¦the ā€œWhatā€™s next?ā€ thatā€™s always in our CIDP minds.

I can tell you there are other things my doctors have done that helped me tremendously with IVIG side-effects.

First, my neuro changed brands three times before we settled on Gamunex. It seems to work best for me, but every brand is formulated differently, so thatā€™s always possibleā€¦another brand change for you?

Second, Iā€™ve been placed on 80mg of Solu-medrol before my infusion even begins.

Third, I am on a 500cc bag of D5-1/2 for hydration, plus, Iā€™ve been told (and experienced) that the sugars in the D5 solution help buffer the IVIG and reduce side-effectsā€¦as does the hydration itself.

I, too, receive diphenhydramine (Benadryl) IV throughout my infusions in 50mg doses, up to 150mg during the 5-6 hour infusion. Now, THAT always gave me acid reflux in my chest, and also some chest pain and even occasionally a palpitation or two.

That feeling eased in my case, when the infusion therapist dilluted the Benadryl IV a 60cc syringe mixed with IV saline. Combined with a slow infusion of the dilluted Benadryl, it most definitely eased and then eliminated the onset of the ā€œdeathā€ feeling and the anxiety that goes went it, in my particular case.

Those are things your MD can order very easily and should not have any problems with ordering for you, unless you have things like diabetes, hypoglycemia, problems with your kidneys that would be worsened because of the sugars in the D5-1/2, things like thatā€¦so itā€™s always better to ask someone who knows your entire medical history to assure your safety.

SLOWER IS BETTER:

My infusion nurse (Iā€™m on home infusion, not at an infusion center) gives me the solu-medrol, then 1/3rd of the hydration solution, THEN he hooks up the IVIG and runs it at 30cc/hour. After checking my vitals every 15 mins, if my BP is good, he will up the pump to 50cc/hr for an hour, etc. By the time Iā€™m on my 4th hour, I am at 100cc/hr, and at that time he gives me another 1/3rd of the hydration and some more Benadryl dilluted mixture.Then, I go to 150cc/hour at about hour 5, until the IVIG bag is empty.

Since I have a medi-port (a small medical miracleā€¦I am SO glad I got one, instead of having to ā€œblow all my veinsā€), he flushes the port with saline, then gives me the last of the hydration, a final dose of Benadryl dilluted solution, and then flushes/fills the port with heparinized saline.

Sure, I get headaches and the usual muscle aches, and I did definitely have stomach acid problems, but in my case, a Prevacid before the infusion, then eating a bit afterward keeps things ā€œnormalā€.

Some doctors allow Zofran or other anti-nausea medications, but Iā€™ve found itā€™s not so much the nausea as it is the acid reflux that the Benadryl seems to cause.

Those are my experiences, and clearly, yours are differentā€¦but perhaps changing brands and talking to your doctor and infusion nurse about starting the IVIG at a slow rate, then slowly increasing it? Also, about dilluting the Benadryl and infusing that slowly, plus maybe a Prevacid or something similar about 1/2 hour before your Benadryl, depending on what you doctor feels is best.

Iā€™ve found itā€™s all in the way things are administered that makes or breaks the ability to tolerate the infusion well, in my instance.

If you have a doctor and an infusion nurse willing to slow things down and dilllute the Benadryl, for example, and infuse that more slowly, along with (even Tums?) Prevacid or similar before the infusion starts, it may do wonders.

Clearly, you are in a panic mode and rightfully so, because the fear of pain is almost as bad as pain itself. The key may be to break the cycle of the pain fear, and reduce or eliminate your Benadryl side-effects by slowing everything down and adjusting dosages to your tolerances.

God bless, and please keep us posted. We are all here for you!

4

Sounds like tough going. Did you know that peripheral neuropathy is often linked to inflammatory bowel disease (IBD) like Chrons? And can appear many years after the IBD?

Rough going getting the more nasty side effects of IVIg because it is like you were getting the best possible benefit and that period off took you back to no benefit. IVIg has a "life" in your system before it "wears off" and you probably demonstrate that very well. Everything looked OK for a while - you think all is good - but it sneaks up and clobbers you. I get only a few quite minor side effects so it is very difficult to put myself in your situation.

I imagine that the only real answer to to tough it out to get back to routine IVIg. You know it works - all you need to do is work out how to get back there while avoiding the worst. Hopefully your neuro will come up with a cunning plan.

Good luck.

5

I would look at a different treatment all together. Sure, changing brands could help, yet I donā€™t see why you shouldnā€™t try something else at this time.

Have you ever had plasmapheresis? Perhaps you could try this a couple times?

Having the surgery could have also thrown your body into a relapse. CIDP is funny that way.

Truth be told, IVIG just masks the symptoms that CIDP has caused your body. It does not cure you. Plasmapheresis too. Once these treatments work out of the bloodstream, bam, all the havoc and damage caused is right there again, waving its ugly little hand hello at you again.

So how does one try and get this sucker into a remission? For some people, IVIg and PE have thrown them into a remission. For others, oral immunotherapy meds have, though I doubt that an option with Crohnā€™s (but I am no expert on that disease, just know its nasty too).

The standard treatment of IVIG, PE and steroids all of the sudden stopped working for my partner, too, after she stopped doing the IVIV for 2.5 months due to insurance changes. She slowly declined to the point where she was when she started the ivig, then suddenly, rapidly became incontinent, paralyzed, and on a life support ventilator.

Her neurologist then suggested that he try Rituxan, a chemo drug. Not a chemo drug such like the ones we hear about that are used to fight tumors. Anything that manipulates the blood cell is classified as chemo, btw. He said that for some people the Rituxan attaches to the part of the cell that CIDP has ā€œbrokenā€, and more or less stops that cell from misbehaving.

At that time, I had no choice but to say yes, we will try this, because the paralyzation had hit the vocal chords and was starting on the respiratory system.

Saying yes was the best decision I ever made. Because she was in such bad shape, he gave her the JRA dosing of 375mg/week for 4 weeks. Typically the effects of the Rituxan are seen in six weeks, but in her, after about ten days, she could move her legs again. And she kept getting better and better. And now, 10 months later, is walking again, writing again, breathing on her own, not in a rehab.

Every six months she gets her Rituxan, and it has saved her life and given her some quality of life back.

6

All of the above is great advice. The only thing I would add is SubQ IVIG really reduces side effects. You can do it once a week, twice a week, etc. Tailor it to your needs and reaction. That way you can still see if full dose would still help. Cytoxan, cellcept, and Imuran are also second line treatments that may be an option but they also might take a while to work. Mary B

7

Hello Sunshine, thank you so much for reading my post and taking the time to answer. I feel such comfort talking to other CIDP sufferers because we know how we feel and I donā€™t have to hear the well meaning crap other people say LOL. Right now, sleeping on the ground floor is not an option and I really would love to begin thinking about selling our home. I donā€™t have any children or much help at all except my wonderful, devoted, loving husband. I am truly blessed to have this man and thank God for him every single day. I feel like such a burden and like I am ruining his life. It really sucks being sick, doesnā€™t it. I started the Methotrexate on Saturday and I am having the Iv Solu Medrol Monday. I am praying the side effects wonā€™t be too bad and I wonā€™t be running around the house like a steroid crazed lunatic for days!!!



Sunshine said:

Iā€™m so sorry you are going through this. I wish I had something profound to say, but I donā€™t. The only way I have managed to keep my sanity through my struggle with CIDP is to modify my life. I now sleep on a ground floor bedroom so I donā€™t have to do the stairs. Hubby is now in charge of laundry, my 16 yr old son does the grocery shopping and fills my car with gas and runs errands for me and my 18 yr old daughter helps cook when she can which isnā€™t too often as she is a senior this year and is in school from 7AM till 930PM with all her extracurricular activities. Much of the time, I go to work with lent from bath towels on my scrubs and my fellow nurses help me de-lent with a lent roller and they go to the cafeteria for me to get me lunch when I am feeling to weak. Two of the hardest things for me to learn to do were asking for help from others and learning to say ā€œNOā€. Since my husband works night shifts I often find myself eating a lot of cereal or yogurt for supper which means I really have to make my breakfasts count so Iā€™ll eat fruit and boiled eggs. I do believe my 16 yr old has become a regular at dinner time at his various friendā€™s homes so on Fridays, I return the favor and allow him to either invite his friends over for delivery pizza or give them my ATM card and he treats them to fast food which is something he once thought he would never grow sick of, but there for a while, it was just him and me and God bless him, that boy can barely make mac n cheese. In the beginning of my CIDP journey, the doctor I work with kept telling me that I had to take baby steps and break everything down into small goals and just worry about the task at hand and to ā€˜live in the momentā€™. I wish you patience, peace, and healing.



Sunshine said:

I'm so sorry you are going through this. I wish I had something profound to say, but I don't. The only way I have managed to keep my sanity through my struggle with CIDP is to modify my life. I now sleep on a ground floor bedroom so I don't have to do the stairs. Hubby is now in charge of laundry, my 16 yr old son does the grocery shopping and fills my car with gas and runs errands for me and my 18 yr old daughter helps cook when she can which isn't too often as she is a senior this year and is in school from 7AM till 930PM with all her extracurricular activities. Much of the time, I go to work with lent from bath towels on my scrubs and my fellow nurses help me de-lent with a lent roller and they go to the cafeteria for me to get me lunch when I am feeling to weak. Two of the hardest things for me to learn to do were asking for help from others and learning to say "NO". Since my husband works night shifts I often find myself eating a lot of cereal or yogurt for supper which means I really have to make my breakfasts count so I'll eat fruit and boiled eggs. I do believe my 16 yr old has become a regular at dinner time at his various friend's homes so on Fridays, I return the favor and allow him to either invite his friends over for delivery pizza or give them my ATM card and he treats them to fast food which is something he once thought he would never grow sick of, but there for a while, it was just him and me and God bless him, that boy can barely make mac n cheese. In the beginning of my CIDP journey, the doctor I work with kept telling me that I had to take baby steps and break everything down into small goals and just worry about the task at hand and to 'live in the moment'. I wish you patience, peace, and healing.

8

Hello, I tried Sub Q IG for a summer. It is associated with very low side effects and you can give it to yourself every few days at lower doses than one big dose for IV. It was time consuming for me so I went back to IV but I know if I ever start to have side effects with IVIG I will certainly turn back to Sub Q IG. Also, try Gamunex C as your brand. This brand is associated with less side effects than other brands. Something to do with the additives they use. I use Gamunex C and have never had any problems. I know that Sub Q IG is not actually approved for treating CIDP but talk to your neurologist because they can prescribe it that way - mine did. You can have a nurse come out the first few times to help you administer the SQ infusion and once you feel comfortable enough you can start to do it on your own. I even took my IG to work one day and did my infusion while I was at work because I was jammed for time that weekend. Good Luck.

9

DoggyMama,

Please don't give up hope there are alternatives to IVig. I have had CIDP for 38 years and have tried everything myself. IVig just gave me a headache and a huge medical bill. Plasmaphersis works well for me. It slows/reverses the destruction during a relapse with very little side effect. Coupling that with an immuniosuppressant - like immurane, etc - may also give you longer relief. Presidsone always made me feel grumpy and blew me up like a balloon so I avoid that. Another thing you may want to consider is an anti-depressant. I use zoloft or its generic. It reduces the pain, evens me out and helpd me to remain positive. A chronic disease must be managed on many fronts...or else it will manage you. Good luck dear. I know the sun is just beyond this cloud.

10

SWIM.

I've been through 90% of the recommendations, treatments, bug-a-boos, etc. mentioned in this thread. CIDP is different for everyone. No general treatment will work.There are no replacement parts... there is HSCT, but that is in the Formula One racing car realm; a complete rebuild of the auto and auto-immune system from the ground up.

CIDP is analogous to a bad battery in your car(well, billions of nano-batteries), a battery that is defective, a battery that is feeding erratic and lesser amounts of electric current to every motor (muscles, etc.) and device in that humungous Escalade-Hummer state of mind and body that resides within all of us (or maybe just the NASCAR groupies). Current (action-potentials) feeds the road trip dream state and all your life-movement; the auto-body state of a perfect road-trip life, until the auto-buggar-up and autoimmune kicks in and the break-down eventually occurs. Then we are left on the side of the road, hood up, waiting for the tow truck and the MD mechanic who may or may not know what the problem is or how to fix it.

On life's road trip, with CIDP, the body's wiring shorts out and sputters and spits at the motor-neurons, and then needs a pit-stop at the infusion center to rejuvenate. After a patch up with a well-fitted A.F.O.s, a stiff beni-drill drink and a gas-up with IgG (Gammux for CIDP... as most CIDPers should use this brand. Analogous to synthetic oil for high performance!)... and then we're off again towards the real America Dream, Vegas and the good life.

I have a bad mixed-metaphor going here... gas and current.

But that is the real problem with CIDP! With CIDP our nerves are like exposed electrical wiring drowning in body-water, Ka+, Na-, Mg2+ and a thousand other chemicals and proteins, and such and such, that have lost their permanent or temporary purpose in our lives and bodies.

And as every good mechanic knows, electrical problems are the hardest to track down. And to complicate matters, the shorting out of action-potentials is part of a cascade of events that are like quantum field/particle dualities... try to pin-point the problem, the single point or substance, in the fluxing and f*&)ing cascade of CIDP, and the mechanic discovers that the field effects of B-cell, macrophage, cytokine activity obscures the repair and masks the problem.

What is all this blather from Estaban? Well, perhaps being terrified and losing all hope is the place you need to be to stop denying you have this horrible disease and move on. All the neuroboys and girls can do is throw darts of medical science at us hoping for a bull's eye, or a higher score, by hitting in the inner rings of our f*#&%^ing ridiculous disease. At the end of the day they have a beer at the local pub, go home, then start the day again... in other words, they don't care if you lose hope, really, it is just a job to them, mostly based on statistics when dealing with CIDP.

SWIM. I find this the only magic answer to CHRONIC&FOREVER CIDP. Franklin Roosevelt had a CIDP variant (not polio) and his salvation was swimming. But it has to be purposeful swimming, maybe even extreme hard-stroking lap stroking until you reach a point where the life guard must hoist you out after every exhausting work-out.

I do 70, 25-meter laps every day or every other day. I walk (when I can) 2-3 miles in my big back yard using either 5,8 or 10 pounds weights. I place 20 to 50 pounds of weight on my weight machine for repetitive sets of 20 to 50; these sets exercise the big muscle groups and make me huff and puff so I have the strength to fight the big, bad CIDP wolf when he comes a-kockin'.

I've discovered that any exercises that requires odd-angle bending or out of sync movements (gardening, yoga, Pilates, most warm-up exercises, calisthenics (unless in water), mountain climbing, trail bike riding, etc.) are more harmful to me than good.

Exercise like a rigid machine after a slow warm up of machine precision... and always keep in mind that it is a motor-neuron disease (It's the muscles!), not some voodoo spell or mystery disease from American television soap-operas.

1 Like
11

Hi David, thanks for the warning and the giggles, if you think ypu get hungry with iv steroids have you ever had oral prednisone? That is like smoking a hundred joints at once. When I was first married and on steroids, I used to wake up at 4am and have an entire 5 course meal! It is
Ike never ending hunger in the pit of your belly. Terrible side effects to steroids. I was on them for years. Feel well, Jo



DazedandConfused said:

Doggymama,

About being a ā€œSteroid Crazed Lunaticā€?

I can tell you from experience that steroids will give you strange food cravings. My wife asks me if Iā€™m pregnant, because I will have my solu-medrol for a couple of days, then get the strangest cravings!

Last time, I HAD to have Chinese food. I mean, HAD to. Iā€™m not a ā€˜binge eaterā€™, never have beenā€¦but the methylprednisolone (solu-medrol) can definitely set you off on a munchies streak like it was the 70ā€™s again! :slight_smile:

So, if there is any particular food you ever have craved (say, in the past year or so?) best to stock-up on it now, so you donā€™t have to try to get to the store, or send your husband out at midnight to the all-night donut shoppe!

Just ā€œFood for thoughtā€ā€¦literally!

I sincerely hope you feel better with this round of treatment.

You are in my prayers,

David

12

And here is me thinking coffee, cake and biscuits was the GO....

13

Three words: Kentucky Fried Chicken. Begged my husband to get dinner on his way home & he so kindly went. I asked for a meal w slaw, green beans & biscuits. THE MAN COMES HOME WITH ONE! ONE! Heā€™s a big eater & Iā€™m not so I figured heā€™d know what to do when I said ā€œIā€™m dying for KFC w some biscuitsā€. I know, I knowā€¦beggars canā€™t be choosers. Too funny. I worried about getting hungry w the steroids because I have eating issues w my crohns & hiatal hernia, but I wolfed down that KFC & my ONE biscuit likeā€¦wellā€¦a wolf :slight_smile: I guess Iā€™m not going to have much trouble gaining back that 30 lbs I lost huh?

14

Oh David, you are a funny man. I havenā€™t laughed like that in a while. Of course, said husband heard & asked what I was laughing at so I showed him. He laughed too & said that in his defense, he didnā€™t know me when I had steroids in the past. I have always been a fairly tame, healthy eater until I started having digestive issues. Then I ate very little & not healthy at all ie your sugar cookies. Then when I was on ivig, I was always sick to my stomach. I didnā€™t eat from the day of treatment and the entire week after. That turned into two weeks & by then, I was reacting so poorly that the dr felt we had to stop. So to be fair to him, he thought I would take 2 bites of chicken, a nibble of the biscuit & Iā€™d be done. Boy was he surprised! I ate the entire biscuit while unpacking the bag! I was ready or @ least 3 moreā€¦I searched & searched. ā€œDid you leave a bag in the car?ā€ ā€œNo,ā€ he said. ā€œWhere are the rest of the biscuits,ā€ I mumbled around the one in my mouth. I couldnā€™t believe when he told me I was eating the only one. ā€œOne!! You got one biscuit?? One?? What am I supposed to do with one?ā€ Too funny. Heā€™s learning already. Thanks for the tip on the post it. Heā€™s a wonderful husband so I would never staple his forehead. Iā€™ll use tape instead :wink:

15

Doggymama

Believe it or not tweaking your sleep, eating and exercise can have a major impact on dealing with chronic illness.

Eat clean: Wild fish no dairy, GMO or sugar and exercise (even if you can only do moderate activity like chair yoga).

Dr.Dale E. Bredesen from UCLA ā€˜s paper ā€œReversal of cognitive decline: A novel therapeutic program ā€œ had a phenomenal 90% response in Alzheimerā€™s patients using low glycemic, low inflammatory, low grain diets[ Rationale and References: Minimize inflammation, minimize insulin resistance.], Personalizedā€”yoga or meditation or music[ Rationale and References: Reduction of cortisol, CRF, stress axis] , 8 hr sleep per night; melatonin 0.5mg po qhs; Trp 500mg po 3x/wk if awakening [ I like Puritan Prides bi layer slow and quick release Melatonin # 53098 and their 5HTP Item #5-HTP 100 MG Chewable Item #023520]. I found green tea in the morning washes out the sluggishness.. But of course you should pass this by your Docs and pharmacist for potential contraindications.

You can improve your body and mind..You deserve it!

21-QUOTEHanginthere.jpg814Ɨ742 117 KB

16

DazedandConfused

Have you asked your Docs about inhaled NAC (Mocomyst) after a bronchial dilator?

SOURCE: Neuropathy [Below] & https://www.youtube.com/watch?v=vTXSTGGRvKY

N-acetyl-L-cysteine ameliorates the inflammatory disease process in experimental autoimmune encephalomyelitis in Lewis rats
Romesh Stanislaus , Anne G Gil Avtar K Singh and Inderjit Singh
1Department of Biostatistics, Bioinformatics & Epidemiology, Medical University of South Carolina, Charleston, SC, USA
2Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA

Journal of Autoimmune Diseases 2005, 2:4 doi:10.1186/1740-2557-2-4

As evidenced in the manuscript, NAC(A.K.A. n-acetyl cysteine Mucomyst) can inhibit the production of inflammatory cytokines and nitrotyrosine in the CNS during EAE pathogenesis. Thus, NAC holds out to be a promising therapeutic agent for the amelioration of MS/EAE.



DazedandConfused said:

Thanks for the laughs, too, Jo!

I just had my latest infusion a week ago, and this time around, my cravings were for those "break and bake" Pillsbury sugar cookies...WITH red sugar (like at Christmas).

Honestly, I never thought the treatments to our autoimmune condition(s) would require so much "nutritional maintenance" :-)

Clearly, sugar cookies aren't too nutritious, but then again, where's the fun in having carrots when cookies are available?

I love the fact you had the whole 5 courses! Now we know that not only can you eat like a real trooper, but you also have been raised well! No fast food for Doggymama...only the best cuisine for you!

Hey, if you are going to have cravings, go all the way, right? Have I mentioned McDonald's Egg McMuffins with Sausage and Egg at 4am at the all=night drive-through? Oh, yes! No better way to fly!

I have, in fact, been on oral prednisones back about 8 years, now...when I had pneumonitis and for some reason, my lungs had swollen to TWICE their normal size, reducing my oxygen sats to about 92%. TONS of prednisone and a week in the hospital later, I was finally "busted" for sending my wife out and "sneaking" food in to my room.

Hospital food just won't do, when you can have home-made chicken pot pie and pecan sandies for dessert!

Okay, I realize we're not on the "Epicurious" website, but if I've made anyone hungry, then my job here is done.

God bless, and carry on...there's food to be had! :-) (yes, two smiley-faces in one message is pushing it, but it is SO needed when talking about crazy food cravings!)

Oh, I brought this for you, just in case. As Julia Child would say, "Bon Appetite!"

17

So three weeks ago I had 1000mg IV Solu Medrol and then began 12.5 mg of Methotrexate. I was exhausted after I took the pills. The steroids did not seem to have any effect for dive days. Then, the numbness started to feel better. And it has gotten better and better and better!! I cannot believe it. I am also taking 300mg of Alph Lipoic Acid according to latest blind study. I will increase to 600mg soon. I hope this continues to work. I guess if the effects wear off, I will know it was the steroids and not the Methotrexate yet but this is the fourth week and so far, so good. I pray this keeps working and my husband and i are able to get some of our life back. Maybe the doctors are right and the treatment really is very individual. I read so many bad things about this combination that I never thought it would help. Just got blood drawn on Monday so I will keep you posted on my numbers. I pray they are good so I can stay on this drug! I am beginning to see a possible lifeā€¦