In a mess with Solumedrol! Please help.

    • Anonymous
      September 8, 2009 at 10:44 pm

      Hi Alice and everyone,

      I really need some advice. I was diagnosed with CIDP several years ago.
      I tried IVIG for well over a year and it did nothing! No luck at all with it.
      I have tried Embrel, Orencia and a host of other pills without much
      success.

      Then I too was put on the miracle drug Prednisone. It’s the first thing
      that made any difference! But, my doctor won’t use it long term. He
      won’t budge on that. So, we cut down my dosage to where I am on
      5 mg/day and miserable. I probably would be even worse without the
      5 mg!

      About 4 months ago, I started getting a Solumedrol IV drip every other
      week. It has helped with the pain. My inflammation factors (Sed rate,
      CRP, etc. have all gone down). The problem is the side effects. I am
      going out of my mind! The insomnia is terrible and I am a bundle of
      nerves! My panic disorder is out of control! I am dying of the heat all
      the time. My face is flushed. I have a metallic taste in my mouth and
      sometimes I am so itchy that I can’t stand it. Last Thursday we cut
      the dosage to see if it would make a difference. It hasn’t. I came home last
      Thursday and have not gone out since.

      Have any of you had any experience with Solumedrol? If I need to
      stop it, do you have any thoughts on what I could try next? I really
      don’t know what to do. I feel so stuck. Any advice would be greatly
      appreciated. I feel more lost than ever.

      Thanks in advance.
      Sandila

      P.S. We were set to take a mini-vacation this Friday. Our first in years, but if I feel like I do tonight there is no way I can go. I know that my husband and friends will be angry with me. There is no way they can understand. My reality is that I have not been able to get out of bed since last Thursday. How in earth can you go on a vacation feeling so horrible? I feel like such a disappointment. Does anyone know what I mean? How do you cancel plans at the last minute like this?

      P.S.2 I just had a thought. What if I upped my oral Prednisone tonight. I wonder if I would feel better by Friday and be able to go. What do you think?

    • Anonymous
      September 10, 2009 at 12:29 am

      I’m suppose to go out of town in 2 weeks for a 3 day weekend. I’m scared to no end. I stay in bed till 3-5 PM a lot and have very small window of time to do simple stuff.My family wants me to be included in a special family event but I”m wondering how/if/what will I be able to do??? Will the 2 hour drive there in the back sit of car make me be in bed the whole time?? I’ll make the necessary appearances somehow. Still worried I’ll disappoint.
      I made sure I’d have a private room to myself on this upcoming trip.
      3 years ago flew 500 miles and did okay. Stayed in the guest room mostly and jumped up to go say HI at meals.
      I’d recommend taking a fan with you as our body temps get so hot.
      Sometimes we can even surprise ourselves by what we do.
      If you really can’t do the trip then don’t or step a realistic expectations for YOU.

      Solumedrol makes me go bonkers. I only ask for it when IVIG side effects way too much. Had 1/2 a dose last week and it made me cry, not sleep and feel wired. The thought of taking it several times a month-NO.

    • Anonymous
      September 10, 2009 at 8:59 am

      Sandila, thanks for answering my thread…now I have no idea what solumedol is but was on Predizone for over a year and to me that is what made me able to walk again when I started I was in hospital and was taking very high doses150mg in the morning and 100mg at night then when I came home after 3 months its was 80mg in the morning and 50 at night every day till the night doses were cut off decreasing by 10 mg every week the mornig dose was cut when I was not taking any at night, I would take 80 mg every other day for 2 weeks then decrease the dose by 5 mg till in September of 2008 ( the end) I was off completely… I understand about not wanting to go on hoildays when you feel bad sometimes it makes you feel better and sometimes it dosent..but you have to do whats right for you…my niece is a singer and see was in a club in Toronto when I was in hospital but Ihad to go see her(I’m a proud aunt!) so hubby packed me up in the dead of winter in a wheelchair and all my meds looking like a zombie and I went to see her I felt so great…it lefted my soul so maybe that well work for you too but dont get to tired!!! either way take care of yourself theres ony one of you thanks again sister in arms Brenda

    • Anonymous
      September 10, 2009 at 12:46 pm

      Hi Sandila,
      Hubby has CIDP and I have MS. I took IV Solumedrol several times for MS flareups. Stopped taking it due to it making me very manic. And I am a really laid back person with no elements of hyperness or anxiety in my personality. I started making phone calls to politicians that I disagreed with . I’m sure they had a good laugh as I was really talking a mile a minute and was actually very humorous in what I said. But I refused to take it again as I was so hyper and couldn’t sleep either. Hubby is on IVIG only, and when neuro. suggested pulse steroids I told about my experiences and they were reluctant do to what I went through. Maybe they could try knocking down the dose or frequency with you? Here is a site where Solumedrol takers talk about their experiences and give tips. It is an MS site but the effects are the same for everyone. [url]http://ms.about.com/u/ua/treatments/user_medrol_tips.htm[/url]

    • Anonymous
      September 10, 2009 at 2:42 pm

      I’ve read your posts about solumedrol and was surprised by your side effects.

      My 5 year old has been on solumedrol for over a year. He receives it each week at home. These are the only things we notice:

      He gets pale a few minutes into the drip but that is gone the next day. He will get moody but it’s usually gone the next day too. He doesn’t complain about the heat but we don’t let him out if it’s over 86 or something outside.

      Now, since he’s 5 years old, he may figure the way he feels is “normal.”

      Good luck

    • Anonymous
      September 12, 2009 at 4:26 pm

      [COLOR=black]Sandila,[/COLOR]

      [COLOR=black]Let me give you my answers to your questions, and then give you some additional information. [/COLOR]

      [COLOR=black]IVIg did not really work and you are not dealing well with the Solumedrol/prednisone. Another possibility is to try plasmapheresis. Search for my name and you well find a fair bit of information and experience in dealing with plasmapheresis. It also sounds like you have done just one thing or another, that is, IVIg, then glucocorticoids, but not the two together. If so, you and your neurologist might consider a combination therapy, in which you try two or three things together. It will take a long time to get the mix right, but it is worth a try. I have to use a combination therapy, and even after two years, we are still tinkering with it. My particular therapy is three 1.2-volume-exchange plasmapheresis treatments spaced every 6 weeks, ~2.3 mg/kg/day of azathioprine, and prednisone, starting at seriously high doses and tapering slowly down to nothing (I just recently reached that goal and we are in the watch and evaluate mode, to see if I might need to start some prednisone again). [/COLOR]

      [COLOR=black]Now, for the additional information. Sorry if part of it is a bit technical, but these details are important for understanding what it going on. Prednisone and Solumedrol are both in the class of hormones known correctly as glucocorticoids. Actually, prednisone is what is called a pro-drug, which is something that the body converts into the active agent. In this case, prednisone is converted by the liver to prednisolone, the active agent. Solumedrol is the brand name for methylprednisolone. It is similar chemically to prednisolone (as you might guess from the “methyl”). Methylprednisolone is a bit more potent than prednisolone.[/COLOR]

      [COLOR=black]You don’t say how much Solumedrol you are getting. My guess is that you are getting a big dose. Unfortunately, the same side effects you are getting with Solumedrol, you would also get with the equivalent dose of prednisone. I suspect your neurologist is trying a variant of the “pulse steroid” protocol. I think the most common version starts with 500 mg of Solumedrol once a week for a month or until symptoms stabilize, then tapering down by 100 mg each month until the symptoms start to worsen, then bumping the amount back up. Are you still getting the same amount now that you were 4 months ago? Are you also taking oral prednisone along with the Solumedrol? Your neurologist should be able to e-mail what doctors call a tertiary provider (typically an expert at a teaching hospital, for example, Dr. Gareth Parry at the University of Minnesota) for details and consultation.[/COLOR]

      [COLOR=black]Your doctor is wise not to leave you on prednisone long term. As you have discovered, there are nasty side effects. The ones you mention are short-term effects. Long term effects include cataracts; osteoporosis; diabetes; avascular necrosis, in which the head of the femur or humerus starts to decay; and other subtle changes. You really don’t want those. [/COLOR]

      [COLOR=black]It is possible to deal with many of the side effects, although just how well is completely individual. For example, to reduce the rate of bone loss, you can take Fosamax or a related drug along with calcium and Vitamin D3. For stomach upset, you can take Pepcid or a related drug. While you can’t prevent cataracts, the surgical treatment and vision changes are tolerated well by most people. If the insomnia is terrible, there are sleeping pills. We know how to treat diabetes, so while it may suck to become diabetic, it is something that you can deal with. I am not saying you or anybody should stay on prednisone. You shouldn’t. However, if absolutely nothing else works even in the slightest, it may be the devil’s deal you have to accept.[/COLOR]

      [COLOR=black]I hope your vacation goes well.[/COLOR]

      [COLOR=black]MarkEns[/COLOR]

    • Anonymous
      September 24, 2011 at 2:56 am

      [QUOTE=Sandila]Hi Alice and everyone,

      I really need some advice. I was diagnosed with CIDP several years ago.
      I tried IVIG for well over a year and it did nothing! No luck at all with it.
      I have tried Embrel, Orencia and a host of other pills without much
      success.

      Then I too was put on the miracle drug Prednisone. It’s the first thing
      that made any difference! But, my doctor won’t use it long term. He
      won’t budge on that. So, we cut down my dosage to where I am on
      5 mg/day and miserable. I probably would be even worse without the
      5 mg!

      About 4 months ago, I started getting a Solumedrol IV drip every other
      week. It has helped with the pain. My inflammation factors (Sed rate,
      CRP, etc. have all gone down). The problem is the side effects. I am
      going out of my mind! The insomnia is terrible and I am a bundle of
      nerves! My panic disorder is out of control! I am dying of the heat all
      the time. My face is flushed. I have a metallic taste in my mouth and
      sometimes I am so itchy that I can’t stand it. Last Thursday we cut
      the dosage to see if it would make a difference. It hasn’t. I came home last
      Thursday and have not gone out since.

      Have any of you had any experience with Solumedrol? If I need to
      stop it, do you have any thoughts on what I could try next? I really
      don’t know what to do. I feel so stuck. Any advice would be greatly
      appreciated. I feel more lost than ever.

      Thanks in advance.
      Sandila

      P.S. We were set to take a mini-vacation this Friday. Our first in years, but if I feel like I do tonight there is no way I can go. I know that my husband and friends will be angry with me. There is no way they can understand. My reality is that I have not been able to get out of bed since last Thursday. How in earth can you go on a vacation feeling so horrible? I feel like such a disappointment. Does anyone know what I mean? How do you cancel plans at the last minute like this?

      P.S.2 I just had a thought. What if I upped my oral Prednisone tonight. I wonder if I would feel better by Friday and be able to go. What do you think?[/QUOTE]

      Sorry to hear your wows re the Solumendral, my husband is 3 weeks out of hospital after 5 days of 6hour IV’s each day. He had been having Polygam IV’s before that every 6 weeks, with no real improvement. He hasn’t had any relief from the pain after the Solumedral week of infusions, in fact he had some really bad side-effects…………angry Steroid Eyes and mood, plus he got Vertigo. I understand your desperation and your anxiety re going on a vacation when each day one doesn’t know if it’s going be a better or worse day. But I will say that the vacations we have taken, short ones, Ronnie my husband has really enjoyed and benefited from, perhaps it is just the change of scenery………………hope this helps. Lesley Blues. South Africa.