Eye Exams

General General CIDP Discussion
1

On Monday of this week I had an eye exam. I had a severe reaction that caused a total relapse.

I called the clinic where the exam was done and received a call back from the Doctor. After some discussion he admitted that the eye drop drug they had used "PHENYLEPHRINE" to dilate my eyes was probably the culprit. I had really stressed that I have CIDP take Imuran, Prednisone, and various others, plus have IVIG infusions twice monthly at 35Gs each time. I do not think he had a clue what CIDP is.

He told me the symptoms of the drug can be fatigue, weakness, and sleepiness and nausea. Same as CIDP and Imuran. I was unable to walk for 36 hours, was nauseated for that length of time also. Total wipeout.

Today, this Wednesday afternoon I am able to walk a few steps and am getting better.

My question to you good people is this, has anyone else had a bad reaction to eye drops particularly Phenylephrine. I could not find on the internet any site that included this drug's use for eye exams. Just a caution, be careful about any drug that is given to you by any Doctor that has no understanding of CIDP.

Thank you for your responses.

Linda

2

Hi Linda,

Not quite a direct reply to your question, but:

I've been getting Solu-Medrol (Methylprednisolone Sodium Succinate) for quite some time, now as a 400mg monthly intravenous infusion for my CIDP.

I didn’t know of the side-effects, and after some time I noticed that I had lost some lower inner quadrant vision in both eyes, which turned out to be a result of glaucoma from the Solu-Medrol steroid.

This loss has been arrested, although I will not regain my lost vision, so this is just a warning to make sure that anyone reading this does have their eyes tested, and not be put off by worrying about a possible reaction to eye drops.

All the best, from the Holy Land,

Bob Knight, Modi’in, Israel.

3

Linda

I had an eye exam yesterday and opted to have the digital scan of my eye instead of the eye drops ($39) for the very fear of what you had experienced receiving the drops. I find most doctors have no clue what CIDP is

4

Dear Linda, I had a similar but more serious incident after eye drops in my eyes during Nov 1999 and struggled all these years to get to where I am now - nearly totally recovered but cannot go without Polygam and SoluMedrol. Pls email me on ■■■■■■■■■■■■■■■■■■■■■ and we can have a long chat.

Keep your pecker up - all will go well again. Best regards - Mariette Tredoux

5

Hi Linda,
I have wet macular degeneration in one eye. I don’t think it is related to CIDP, but it might be related to MS. I have both. Regardless, the treatment is regular (monthly or bi monthly, depending on response…I get monthly) injections of a special drug into the eye. This requires hyper-dilation of the eye each time. I have never responded very well to the dilation…for many years, it takes a long time for the eye to return to normal and I am super sensitive to any light. This has gotten worse, in my opinion. Of course, part of the problem could be to the betadine drops they use on my eyeball each time, prior to the injection. That sometimes leaves me with a stinging and burning eye for days afterward. They do use a machine to take photos of the retina each time, to be certain the treatments are helping, etc. Is there something, do you think, that makes the dilating drug especially dangerous for CIDP sufferers? Or is it just another “gift” that comes with the territory?

6

I have been diagnosed with CIDP since July 2014,I had two 5day courses of IVG but didn’t,t show enough improvement to warrant the cost.As I had lost a lot of mobility ,I decided I would try Steroids,this was a high dose at first ,gradually reducing,I got down to Six msg a day but the symptoms were coming back,so I went back to 12mgs,this seems to be my manageable dose.When I went for an Eye test,it was discovered that the pressures were very high,34 so I started putting drops in at night,Ganfort,they have reduced the pressure to 13/14,but have interfered with the vision,I had very long sharp focuse before,after using the drops for a month,I have lost the sharp focuse ,so had to have lenses changed to cope,this helped the distance but I find the close vision is fine for a while then I start to lost the sharpness.I,m told the nerves ect of the eye are healthy,so as long as I have the need to use the drops,I,m going to have this focusing problem,has anyone else experienced this,I enjoy hobbies the involve a lot of close work,so hoping it dosen,t get worse

7

Hi Esther,

Somewhat similar to me.

I had IVIG treatment in hospital a few years ago for GBS, and that seemed to sort out the problem, but then after a few months I started showing CIDP symptoms, so the doctor prescribed Solu-Medrol, which I’ve been having ever since. I started with 1,000mg each week, but I’m now down to 400mg / month and it seems just about the right dosage.

But, it did give me glycaemia which destroyed some lower quadrant vision in both eyes. I’m stable now, but I also had to change my glasses to adjust for both near and far sighted change to my eyes.

One big advantage of living here in Israel (I’m not Jewish, so I’m even more blessed) is that it’s mix of being a Religious, Capitalist and Socialist state. Which means: that Israel has top class companies which develop many ground breaking medical treatments, but also that its citizens receive effectively free treatment, so I’ve never had be worried about the cost of treatment.

Having said that, nothing is perfect, so some drugs are not included in the system, but so far this has not been a problem for me, or anybody I know. In some ways it’s like the NHS in Britain, and I’ve had some rather way-out operations there as well.

Back to your eyes, and the eye drops,

I use Cosopt (Dorzolamide / Tomolol) and Xalatan/Cosalt (Latanoprost)

and they are keeping the pressure down.

(they did drill some holes using a laser when they initially found the problem).

However, I do sometime feel that there is a focusing problem, but a few blinks seem to sort it out.

Hope this is helpful,

Bob Knight. Modi’in, Israel.

8

Hi Linda,

Sorry to hear about this reaction. I had mine dilated recently and was fortunate to have just some minor fatigue, floaters, etc. which resolved rather quickly. At this point, my last EMG a few years ago was showing only demyelination in my hands, and the nerves in the legs had progressed to severe axonal damage. I only manage symptoms at this time (no steroids and no more IVIg after a bad reaction and limited benefit) with large doses of gabapentin and occasional tramadol.

If you have had such a serious reaction to the eye drops, be sure to avoid nasal decongestants with phenylephrine as well (4-Way, 4-Way Menthol, Afrin 4 Hour Extra Moisturizing, Little Noses Decongestant, Neo-Synephrine Extra Strength Nasal, Neo-Synephrine Mild Nasal, Neo-Synephrine Nasal, Sinex Nasal Spray, Sinex Ultra Fine Mist, and the generics available).

9

Hey JulieAnn,

Thank you so much for the warning of other drugs. I had no clue two small eye drops could cause such a relapse, I will avoid all nasal decongestants also. We get so much more information from each other than most Doctors or even Web Sites can give us. I'm so sorry about your axonal damage.

Thank you again for the information.

Linda