Help with medication therefore

I haven't been on here to root you on or support you but you have been in my heart with me on my journey to Mayo so l would remember to pray for all of ustogetbetter or to be the best that we can be. I have CIDPInAddition to this inflammatory arthritis that is starting to be called RA again by the top specialists in the world at mayo clinic. I am being treated with Cellcept Also Meytholprendosone plus antibiotics for 12 weeks via lnterveniously weekly.. l will be cocaine awake and chemo like sick at the same time. I'm scared. To death.l hope someone knows otherwise. I miss you all.

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  • I can't help with experience I'm afraid Karen & to be honest, though I may be wrong, but I've not heard of anyone on the site being prescribed Cellcept. I understand it's normally used to treat Lupus so maybe asking on the Lupus site would be an idea? I really hope you don't react adversely to it but if you do it's minor & you find the benefits outweigh the sickness etc & you have fewer side effects the longer you take it. Antibiotics taken in any form for any length of time unfortunately tend to have, ahem, the running to the loo effect so again I hope it's not too bad.

    Sorry you've had the additional diagnosis of CIPD but at least it's the cause is now known. x

  • I agree with Heels - I know a lot of people who take Mycophenolate (Cellcept) and all have Lupus, Vasculitis or Scleroderma. It seems to be very well tolerated and also very effective compared to other DMARDs for multi system autoimmune diseases.It is only licenced in the UK for use in kidney disease and transplants but used off licence for the diseases I've mentioned. Good to know you are in a safe place and in good hands. X

  • Thank you both so very much. I know so little. Yes, My kidneys went that bad during the treatment for RA and this neuropathy treatment with the methotrexate being the culprit. It's going to treat both the kidney spilling proteins and it's not functioning but 50% at best and will treat the autoimmune disease. They talk well above my head sometimes and I have to remind them that I am just a regular girl and they need to talk to "me" but even then sometimes they forget. You helped me more than reading online and in books. I hope to hear even more. =) I wish that I heard some about the high dose steroids by IV. They told me that I would feel wide awake for 2 weeks at a time and that my inflammatory (RA) would feel like it was cured for the summer. Then when treatment was over it would return with a punch to me somewhere around the end of Sept. I was told that I would not be getting more steroids and that the normal pain killers are off limits due to liver and kidney function so I would get a maximum of 5 other pills that won't harm my liver such as oxycodone which I just took myself off of I thought forever. I don't like myself on them.

  • If anyone heard of methylprdnisolone users? That's the other drug they are using for 12 weeks

  • I'm on Prednisolone now - it's an oral cortosteroid that many people with inflammatory or other diseases take long term too. I dont know about the type you speak of but sounds same thing. My liver is a bit iffy just now since I had pancreatitis but I'm getting my gallbladder removed in a few weeks so hoping this might help.

    These drugs are never just benign - always a high price we each pay for them it seems - which is why doctors have to think so hard about whether the balance of risks is greater to us overall. Tx

  • Thank you twitchy. I won't be able to take the kind that you are on because it will cause me weight gain and that will make it difficult for the numbness - that neuropathy. It has overtaken me to the point that I can't feel my feet much anymore. My arthritis in my back nearly has me wheelchair bound - the mechanical issues in my back Does have me wheelchair bound. so yes, I am almost fulltime for longer distances (outside my home) in a wheelchair) until this treatment is done. They think it will make me walk again. Mayo is going to do a procedure on my back as well from the outside. It will be spinal manipulation. Chiropractic in nature that should help it. TwitchyToes, I am almost certain I will die from this in my mind. I have never been more scared. My RA is acting up in my fingers, wrists...and I am miserable all over so I am thinking what do I have to lose.. This is not living. I am only surviving in my bedroom while I wait to go from doctor to doctor. Now is the time and with enough prayer, I believe with all of my heart that This is it or I am going to face God. I can't spend my life in my bed. I was too active before. Everyone said forget that life it's done and over. This is your new life. But what Life?

    Mayo Clinic didn't give me much hope that the neuropathy would stop unless we hit this really really hard with some serious drugs. It progressed in 6 months so much more. It was a quarter of my body last time - now it's more than half - less than three quarters but next it's my breathing.. it will just hit me without notice they said. My blood pressure is so low, Im passing out sometimes, not too often. I can't stand in the dark, nor with my eyes closed. I can't get up fast. So on July 8th, they will do a lot more with me. I am due to start the IV treatments this week coming up already. The only thing that I look forward to is losing all of my RA pain. It will disappear by afternoon they said. 12 weeks of heaven in that sense and much energy but I have to resist even through I feel like cleaning and like dancing all night long. I will feel like I am 16 so I am told. but that drop off will feel like I dropped into a brawl and I got beat up bad. Immediately.

    I have to take a lot of vitamin D plus calcium by IV, and something else but it ran out of my brain at the moment.. I will have someone watching for diabetes because it does just pop up in these cases.. I probably will get it.

    and every bite of food will count - it will be densely packed with nutrition and nothing extra. It will be done in a hospital setting. 12 weeks. Once a week - dietitian will follow very closely. I will get most of the foods to eat.

  • I have no choice about taking Prednisolone Yikes - I'm already overweight and was losing brilliantly before I started it 3 weeks ago and now struggling to keep weight off again.

    I too have horrific neuropathic pain and autonomic neuropathy and it is the loneliest set of symptoms in the world. Do you manage to exercise gently or receive special physiotherapy at the Mayo? For me this is the only way my arthritis has been kept in check and I make myself work out doing yoga, tai chi and other stuff daily.

    The worst thing about the neuropathy for me is that no one knows what is causing it. I can't taste or smell anymore and I have weird sweats and icy numb cold in my legs alternately all day and burning, throbbing nerve pain all through the night. It goes up my limbs and Is now making me feel I've wet myself so I have to keep checking that I haven't. Disgusting! It also affects my breathing and heartbeat and I can't sleep more than a few hours max.

    Prednisolone at higher doses has taken the pain right down to manageable levels and stops the overwhelming fatigue and dizziness so although nothing has shown up in any tests apart from high inflammation - this shows that it is inflammatory by nature at least.

    So I'm not wheelchair bound and I don't believe in God but I do really understand how scared you feel and you have my sympathy coming your way across the Atlantic.

    At least you do know what's wrong and Mycophenolate might change your life massively for the better. Hang in there and don't despair. Twitchy x

  • I believe you that you have no choice - I don't either. It's do this or die. That is how much inflammation I have in my body. It is either inflammatory or autoimmune. The steroids will help greatly to stop the neuropathy if it's inflammatory because the autoimmune drugs sure didn't help it. It has gotten much worse.

    If I even have a cup of regular coffee my heart pounds out of my chest and I feel dizzy and just horrible. I can imagine because the doctor and the surgeon that talked to me in another part of the clinic said that they know that it's like being on cocaine. You feel like crap from being up 2 weeks straight. They both told me that the doctors is very slow to give me ambien because it interferes with the drugs that they are putting me onl They both told me how bad steroids are for me. They are in the chiropractic region or something like that.. so of couse.

    I used to have that icy cold followed by the wet feeling and now Its gone.

    I feel nothing but heavy numb. I have lost the position of my legs and feet

    once under the covers. When I wake up I want to scream because I feel like

    I am amputated at the waist and that I am anchored down. It's a terrible feeling.

    I forget in the middle of the night and thank goodness that my room is carpeted

    because I get up and have fallen hard onto the floor. No feeling means you

    are floating. It's just not possible. I get just a little feeling back sometimes. =)

    Nexium is the other thing that I have to take with the calcium, vitamin D

    and antibiotic will go through me as well as those other medicines Dr. Partain

    will be in charge of those.

    Karen

  • Karen have they not tried you on IVIG yet? This is usually the gold standard treatment for CIDP and is derived from plasma rather than chemicals so should be easier to tolerate. I hope mine never becomes like yours but it's already like living in a very scary X Files storyline. I lost sensation in my gums, lips and up side of my nose and cheek earlier this week and it has never fully returned - just the same numb tingle as after an anaesthetic.

    I really don't have anything more helpful to say but hope like mad they can find a way to help you. X

    Ps not sure if you know this but systemic inflammation is autoimmune so they are the same thing not either or. Many of the drugs for inflammatory (autoimmune) diseases overlap - as do symptoms.

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