I’m new to this, so, Hi to everyone,
I was diagnosed in 2008 with subacute CIDP. I was first given prednisone, but that triggered diabetes, and Ivig. To start with it was every six week then every four weeks till 2011, spending one week in hospital (my second home)every time. In the UK this s always given in hospital. Eventually the ivig stopped working so we tried methotrexate, then azathioprine with no benefit.
By this time walking was very unsteady and I had to use a stroller, holding a knife and fork was difficult. My legs and hand were very weak. A carer came to help me wash and dress. Every day.
In 2011 I started a course of cyclophosphamide with retuximab and BINGO within week I was much better, nearly normal. With only some loss of feeling in my feet, and my hands back to normal. I still had some fatigue and weakness. I was good for eighteen months, then it started to slip. I had more Ivig but it didn’t help. So, I’ve just finished a second course of cyclophosphamide with retuximab and BINGO I’m good again.
This is not a treatment for all, there are risks, but I was in a bad way.
I’m not symptom free but I can look after myself, cook a meal, go shopping, play with my grandson.
If it last eighteen months I’m happy. My consultant said we may try retuximab as maintenance in the future.
I hope this help with some new ideas.
With regards
B
Bella said:
I'm new to this, so, Hi to everyone,
I was diagnosed in 2008 with subacute CIDP. I was first given prednisone, but that triggered diabetes, and Ivig. To start with it was every six week then every four weeks till 2011, spending one week in hospital (my second home)every time. In the UK this s always given in hospital. Eventually the ivig stopped working so we tried methotrexate, then azathioprine with no benefit.
By this time walking was very unsteady and I had to use a stroller, holding a knife and fork was difficult. My legs and hand were very weak. A carer came to help me wash and dress. Every day.
In 2011 I started a course of cyclophosphamide with retuximab and BINGO within week I was much better, nearly normal. With only some loss of feeling in my feet, and my hands back to normal. I still had some fatigue and weakness. I was good for eighteen months, then it started to slip. I had more Ivig but it didn't help. So, I've just finished a second course of cyclophosphamide with retuximab and BINGO I'm good again.
This is not a treatment for all, there are risks, but I was in a bad way.
I'm not symptom free but I can look after myself, cook a meal, go shopping, play with my grandson.
If it last eighteen months I'm happy. My consultant said we may try retuximab as maintenance in the future.
I hope this help with some new ideas.
With regards
B
I have not gotten Dx for CIPD yet. But I will tell you something about gabapentin. 15 years ago I took gabapentin for a condition - it was an unusual treatment, didn't help,but didn't seem to be bothered. When I developed really bad back and sciatic pain, 10 years later, it was prescribed for nerve pain, before Dx of spinal stenosis. I had taken it before so I wasn't worried about paradoxical (opposite) side effects typical for me. But It didn't help.
I was in the process of applying for disability - and eventually got that for Spinal Stenosis and other spine problems - but the pain and attendant symptoms worsened so much I could barely walk across a room and I couldn't sleep for 2 hours without waking up in agony. When I finally got some insurance and health care, I was Rx'd tramadol - helped some. And much better than the ibuprofin I'd been surviving (barely) on. Tried gabapentin again, but didn't help with pain and side effects - woozy, out of it - for no noticable benefit. Then, like one and half years ago, I got a really bad poison ivy. I was given Predisone. Then really bad mosquito bites - I have a deadly allergy. Then soon after, another rash or mosquito bites. It was then that I finally noticed that when I took the Prednisone the crippling pain was less. My mood was great, my motivation was awesome and I got lots done, although it kept me awake and I didn't sleep much at all. I lost weight, yep.
Then I got cataracts! Then a muscle in my arm ripped out! Then I was told that those were common side effects of Prednisone, as was euphoria, and manic states. So, my physician and I decided that I needed to avoid Prednisone unless really necessary. [Now on a side note, I had told her of neurological problems, and a MRI had shown demyelenation, but she did not get me a referral for a neurologist or suggest any therapy related to any kind of neurological condition] As I had been clearly diagnosed with spinal stenosis, all my symptoms, foot neuropathy, weakness was attributed to the very severe spinal stenosis. After the gabapentin trial, no more suggestions, no referral for neurology. I was just creaking along on tramadol alone.
One day I woke up and my arm was like it had been ripped out of socket. Nothing had happened. Dr said it certainly Dx'd as rotator cuff injury. For two months I had no relief of excruciating pain. Tramadol didn't touch it. Dr suggested prednisone shot, I refused, did take small dose presnisone, some relief, wished I had taken the shot and later I did. But before that - in desperation - I took some of the gabapentin I'd had left over, hoping that it might help - and OMG, it worked on my rotator cuff pain significantly. Yes, I felt some woozy and my speech and balance affected somewhat similar to what I imagine a minor stroke, but, I will tell you, it was worth it for relief from agony 24/7. The rotator cuff actually began to heal and I was able to sleep at last.After only 2 weeks it is 98% healed -just since taking the gabapentin. I tried every other natural anti - inflammatory - super high potency curcumin - everything. I kind of hate it that the pharmaceutical did it -like SNAP - instantly.
I quit the gabapentin for a few days to be sure I would not have lasting side effects and the rotator cuff pain was almost gone. The speech and balance effects completely disappeared, so I went back to taking some while the arm-shoulder completed healing.
It goes to show how every one is so unique in their reactions to pharmaceuticals. Even my self, my reactions have been very different for the same medications. And also how your reaction changes as your system gets used to it, dosages too, how the are ingested -with food, without, and many other factors, such as other medications you are taking also.
Ten years of Nortriptalyn, the last two years at the max dose of 150mg/day (my CIDP was originally diagnosed as DM PN. This dosage makes me hallcinate and have wild dreams). I stopped it completely and increased Gabapentin on doctor's orders.
Gabapenten is now at 4800mg/day, to be taken in divided values as determined by me, and in 6 or 8 hour intervals. And yet, that drop foot, my sciatic nerve, peroneal nerve, seural nerves sometime feel like burning lava is being poured down the interior of my leg.
I've discovered that lap-swimming releases my natural to-the-rescue dopamine and consequently my dynorphin/ opioid stores buck me up for 4 hours or more.
Do you think the iVIG isn't working because you have pain? The iVIG is used to supress the symtoms of your CIDP.... such as the inability to walk, possibly some of the pain, but it depends on the person, muscle weakness, etc.
Unfortunately there isn't anything you can do to totally help the tingling until your nerves heal to the best of their ability.
HTH
I've taken Gabapentin, Lyrica, Baclofen, Vicodin, Lidoderm patches, Requip, tizanidine, and Cymbalta. Currently for pain in addition to the IVIG, I've been taking 3600mg of gabapentin (Neurontin), vicodin, requip, & Lidoderm. I'm in the process of titrating down off the gabapentin as it is not working for me currently. At one time, I was taking 3 of those drugs at the same time, but don't remember which ones, and developed Alien Hand Syndrome and had to have them all changed around. The problem I seem to have is once we find a good combination of meds for pain control, they will work really great and kind of fizzle out after a few months and then it's back to the drawing board. My diagnoses are MS, CIDP, and temporal lobe seizures which manifest as staring spells or yawning spells where I yawn every 5 seconds for 10-15 minutes at a time. I would really recommend the Lyrica/Cymbalta combo if you can tolerate it.