Methylprednisilone + Cyclosporin?

Hi! Pleasure to meet you! I was on both of these drugs many years back for my Lupus. I did okay with them and didn’t have to badly side effects. But I was on the Pill and not the IV’s. Are you taking both the steroids and the chemo by mouth or IV and what dose is he starting you on? Reason asking is high doses of the chemo will give nasty side effects but low doses in the pill form are not too bad and the side effects are not too drastic. You might experience some mild nausea and stomach upset on a lose does. Feel tired at first but then that subsides. But that is the pill form. One thing though is they will keep a check on your labs because of liver functioning. So while taking this drug they may check your labs alot. The IV’s of that Chemo. I am not sure about for I never had to take it.
Hope you do well with this treatment. I am still on prednisone today and can’t seem to get off of it! Wishing you my best! 🙂

[QUOTE=kthiemann]Went to see my neuro. today and one of the things that came up is that since the side effects of the steroids are really starting to add up and I can’t seem to ween off of them without having a relapse he wants me to start taking cyclosporin in conjunction with the steroids so that he can ween me off the steroids in a more aggressive manner. He did discuss some potentially nasty side effects with that new med. but it looks like they are considerably less than the steroids.

Has anyone tried this method? Am curious to see if anyone has tried this and what the pos. and neg. side effects were. :confused: :confused:

On a semi good note this weekend is my one year anniversary of going into hospital and being diagnosed with this lovely little critter and was proud to be told that my reflexes/ strength etc. are all testing back in the normal ranges. 😀 :D[/QUOTE]
Hi,
Have you been treated with IVIG? Just wondering as the side effects to the methylpredsnisolone and cyclosporin are pretty heavy duty. I realize that cost of IVIG is a big factor in doctors wanting to use the corticosteroids and other immunosuppressants, and there are those people who don’t have much response to IVIG. We’ve been lucky so far (knock on wood) as my husband is improving on his monthly IVIG. We’ve been able to so far to dig in our heels and stay off the immunosuppressants, but cost is rearing it’s ugly head again and hubby will face his neurologist next month who likely will insist on Cellcept. But I think we will try to go the monthly pulse steroid route if it come down to being refused the IVIG due to cost.
From all my reading about treatment of CIDP, there have been no clinical trials on CIDP and the immunosuppressants like Cellcept and Cyclosporin. The doctors have anecdotal evidence it is helping CIDP patients, but no official evidence exists to my knowledge. Our digging in our heels and refusing Cellcept thus far is based on my husband’s bad experience with Imuran last Christmas. He had sepsis which is life threatening. That is the hazard of all the immunosuppressants i.e. often people will have some small unnoticed infection somewhere in their body and if they go on an immunosuppressant that unnoticed infection can run rampant and the person can be in a life threatening situation very quickly. And you have to pay careful attention to any cuts or wounds that you get as they get infected quickly as your immunity is suppressed by those immunosuppressants. And you have to get medical treatment asap if that happens.
It seems that there are many people who do fine on the immunosuppressants and then there are a few who wind up with sepsis. It is a judgement call whether you are comfortable taking them. It is critical to have the regular bloodwork if you go on the Cyclosporin and that you report any fevers or infections asap to your doctor. You have to watch this like a hawk.
I forgot to ask if you are receiving your methylprednisolone orally or IV in pulse treatments? My reading about methyprednisolone indicates that taking it IV causes less of the Cushingnoid side effects versus the oral daily administration. This is a quote from the CIDP Foundation newsletter. “The required prolonged prescription of steroids may lead to the well-know and sometimes hazardous side effects. These can be avoided by monthly pulse treatments with intravenous Methylprednisolone, 500 mg. on 3 consecutive days, which can be equally effective.”
Laurel

Just wondering when you had the IVIG last September, if you were getting sufficient quantities? I know that my husband gets 1 Grams per kilo of body weight. And on his first go around with IVIG, het got alot more than that (it may have been 2 Grams per kilo). Second question, why did they do the switch to oral methylprednisolone from IV? Just wondering about that as the abstracts I have read keep emphasizing that the monthly IV has less side effects than the oral. I am guessing from reading about the quantities of IV Methylprednisolone that you were on that your symptoms were not being controlled unless you had it IV twice a week? Final question , you mentioned that the side effects to the Methylprednisolone are really starting to add up. What side effects have you experienced? I know that elevated blood sugar, cataracts, osteoporosis are common with the corticosteroids. Oops I have one more question, how are you doing right now symtom wise?
Laurel

I am the spouse of Bill and I just had to reply. My husband was also on Prednisone and Imuran and did get sepsis. I was told by our neuro that if he got sick go to our family dr. Is this standard or is he lacking in his responsibility. Do most neuros tell you this.

Then after sepsis and a l4 day antibiotic he was then doing ivig and I believe he may have had solumedroil (sp?) . Now on PP and did 2nd opinion but almost 3 weeks and no answer except even before any testing was done he (Dr. Levin of the Clev. Clinic in Ohio).said maybe not cidp so go back to prednisone. PP and Ivig too expensive and will not help you anyway.

At one point our own neuro said he might have to add something to the pp. You will never see my husband on Prednisone again according to him and I do not know anything about any of these other meds like cellcept,etc. but I do know we will check with people here before we do anything like that.I hope you do well Ken and keep us in mind as you go thru with these treatments and what you learn. These sights really help us.
Joanf

[QUOTE=joanf]I am the spouse of Bill and I just had to reply. My husband was also on Prednisone and Imuran and did get sepsis. I was told by our neuro that if he got sick go to our family dr. Is this standard or is he lacking in his responsibility. Do most neuros tell you this.

Then after sepsis and a l4 day antibiotic he was then doing ivig and I believe he may have had solumedroil (sp?) . Now on PP and did 2nd opinion but almost 3 weeks and no answer except even before any testing was done he (Dr. Levin of the Clev. Clinic in Ohio).said maybe not cidp so go back to prednisone. PP and Ivig too expensive and will not help you anyway.

At one point our own neuro said he might have to add something to the pp. You will never see my husband on Prednisone again according to him and I do not know anything about any of these other meds like cellcept,etc. but I do know we will check with people here before we do anything like that.I hope you do well Ken and keep us in mind as you go thru with these treatments and what you learn. These sights really help us.
Joanf[/QUOTE]
Hi Joan,
I find this forum really helpful, but I have also found that some doctors seem to be quite defensive when we bring up info. that we have learned here so we have to be ever so careful and try hard not to step on toes or egos. And I would say your husband’s neurologist did lack responsibility in your situation–just as ours did in our situation.

When my husband got sepsis from Imuran last Christmas, what a run around we got! The neurologist’s office was closed for Christmas and the taped message said to go to emergency and ask for the neurologist on-call. We did this and got nowhere with that request and hubby was under care of the emergency physician. Hubby was admitted, diagnosed with sepsis, and transferred to an overflow medical unit–never having seen a neurologist even though I even put the request in writing. First doctor said the Imuran precipitated the sepsis. Second doctor said go back on Imuran. Third doctor said he didn’t know for sure and wait and see your regular neurologist. Hubby went to the neurologist about two weeks after the hospital admission and still was very ill and the neurologist said “you have to go to your family doctor for treatment of the physical symptoms”. We left that office and went to the GP. GP on holiday and we got the locum who said she was totally unfamiliar with side effects to Imuran so she couldn’t advise us–just took more tests. We were left bewildered and scared about what to do. And yet the neurologist said that possibly the Imuran wasn’t the culprit and wanted him to try it again. We adamantly refused. And can you believe that there is a blood test that can determine whether people will be sensitive and react to Imuran? And we asked for that test before he went on Imuran and were told it is only available in the States. We offered to go across the line to get it and were told it wasn’t necessary.

I view our experience as our neurologist not assuming appropriate responsibility. Yet we walk on egg shells while trying to advocate for ourselves for fear of offending and losing this neurologist who is considered the best in our area for CIDP. I am a retired registered nurse, and that seems to make things worse in some ways. I know too much and I know too little. The neurologist says things like “well you can monitor your husband for side effects since you are a nurse, and you will know what to do”. Bull feathers! When hubby got sick, I had a hellish time getting him to go to the hospital and by the time we got there he had a crash team surrounding him within 5 minutes because he was so ill. I know for sure if he is forced to go onto some medication like Cellcept or Cyclosporin due to cost (which it seems to come down to for us at this point as hubby is having good response to IVIG), I will ask for directions in writing from the neurologist concerning taking steps in event of side effects. We have sadly learned that GP’s are unfamiliar with the heavy duty immunosuppressants–as are the small town emergency rooms that are often staffed with GP’s. And as you know sepsis can be life threatening within hours even with good treatment.

A little tidbit that I learned recently due to a listeria outbreak in Canada is that patients who take drugs that lower their immunity should not ever eat deli meats. Doctors should be telling that to their patients routinely when they prescribe immuno-suppressants. Listeria is a bacteria that can occur in deli meats that can cause death in immune suppressed patients. Healthy people might just respond by getting diarrhea and not even know they ran into listeria. Our recent outbreak of listeria in Canada caused 13 deaths from people eating Maple Leaf deli meat from improperly cleaned machines. And I believe 3 or 4 of the deaths were patients who had immune suppression due to drugs that they were on. The newspapers published the info. that patients on immuno-suppressants should routinely avoid deli meats at all times not just during listeria outbreaks. That sort of thing makes me furious i.e. doctors prescribing these drugs and not mentioning things like that which is critical info. to prevent things like sepsis.

Sorry for the long ramble. I’m beginning to feel like the Carrie Nation of immuno-suppressants . Once bit, twice shy.
Laurel

Ohh dear! You really are having a time. Sepsis is very dangerous. You know? We have all the Neurologist out here in the World but yet only a few deal with CIDP. Such a shame too for we have so many that have CIDP or GBS out here in this world and not enough trained Neuro’s to handle the problem. MS, Stroke, Epilepsy and anything considered easy to diagnose we have plenty of doctors to go around but just not enough Specialist for CIDP. Just like in my area. I am going to have to travel 3 hours to and from just to see one of these doctors. And then if he or she is not worth it, then where do I go? John Hopkins is a drive, University of PA is a long long drive and my State only has a few to go to and I hope I am lucky and see a good one the first time around. Scary when we think about it! Good luck and I wish you my best and hope you recover soon! Hugs

I have heard that IVIG should be given for at least 2-3 months-that’s 12-18 body weight loading infusions-to see any improvements.IVIG doesn’t show sudden changes.

The surgeon wouldn’t put in any kind of IV port till I was sure I could handle taking IVIG. I later found out this was a very smart idea on his part.

Solumedrol certainly made me one terrible dish throwing jittery insomniac woman after the last injection to handle severe IVIG reactions. Took over 2 weeks to get myself back in control and the cat really avoided me too.No and never again to any predisone””’

I was on Methotrexate for 18 months and had little side effects.Went off it in June. Next is Cellcept-I want to stop the progression and hopefully lengthen time between IVIG treatments. The summer heat keeps me tired so the neuro said we’ll do Cellcept come winter.