Cycles of illness are exhausting!

Yesterday I took my dogs for a walk with no serious problem. Today I broke into full body perspiration and shakes. My hips have become problematic. My GP ordered X-rays but I have not had the energy to go get them done. I see Hematologist on Thursday and Rheumatologist next Monday. I have not done blood work since early Dec. I stopped the Methatrexate in Dec and never talked myself into starting it back up. She does not like MTX for me because it sends my ALT up. Genetically , I have a double mutation MTHFR, that make the folic acid problematic for me. I am scheduled for Rituxan in June. It frightens me that my condition can change so radically from one day to the next. In fact there can at times be significant difference throughout the day. I need to look up research on Fragile Syndrome. It is apparently far more prevalent amongst people with RD than seniors. My BMI was 17, since then I have regained weight but still BMI is 19. I expect it will drop with the next flare. My inflammation has not yet returned. Fingers crossed, do not need the added mobility issues. In fact it is time to purchase assistive devises, chair for shower, aids to facilitate dressing Ext. There are some amazing gadgets out there lol Hope you are all having a good day

10 Replies

  • Sorry to hear you're having such a difficult time. Hoping medics can get you on to a drug regime that will help to level out some of the more extreme variations you're experiencing. Don't forget the NRAS helpline if you want to talk this through. Best wishes.

  • Hi Damaged - I know all of this is so hard. I presume that since you stopped taking the MTX three months ago, that is much of the reason for your pain. My hips hurt too when I am not in treatment, so starting your medication might help that too.

    Here's hoping you are feeling better very soon...

  • I will begin it again if she wants me to. I was on it for over a year without any benefit. My inflammation came down on its own. Not sure where this is going at the moment. Monday we will sit down and decide a a treatment plan we can both live with.

  • Interesting - Do you have any infected teeth? Or anything else that is contributing to the inflammation? Without an antibiotic or some other treatment it seems odd to me that the inflammation would go away on it's own...

    My apologies - I thought you had stopped it on your own.. =)

  • I am allergic to NSAID's and was reacting badly to Prednisone. My Rheumy rdered Diclofenac but it contains Naproxen. My CRP shot up for several weeks after stopping Prednisone but eventually came down. It has not really flared since. This makes the doctors happy but the pain and fatigue are still extreme. Several added comorbidities also ensure the future will only get harder. I have no doubt that Prednisone will be needed again but we are now aware of how my body will respond to these drugs , in advance. This should reduce the severity of drug reactions. It will soon be two years of compliance , my desition to take a three months sebatical was to regain control and reintroduce one thing at a time. This enabled me to know what was drug reaction and what is disease related. I never reccomend this approach to others. My sensitivities to drugs is what makes treatment a challenge. I also have very little faith left in pharmaceuticals. The fact that so many of you do find a good combination is encouraging. I love my Rheumy so I will do what she asks me to do.

  • Hi Damaged - Like you, a lot of us are allergic or sensitive to, the pharmaceuticals, me included. There are many things I cannot take - not all of them related to RA. One example is antihistamines - It seems odd to be allergic to something that is used to counteract allergins, but I am pretty intolerant to Benadryl, etc.

    I do that too, within the context of working with my doc - move my meds around to see what is dong what.

    Good luck with your remission!

  • yes super gadgets - r u seen by physio as nhs can get u a perch stool, bathseat if shoer in bath. I have these but there are more. xx

  • What is nhs? I assume that is a program in U.K. Or US . I am Canadian. I have access to two Heath plans, mine and my husbands. This coverage will provide assistance devices. I did go to physio but I have been "treated" for chronic pain for years. I have been trough an endless array of tout recent treatments in an effort to find relief. No luck so far. At least now I understand why thanks to pharmacokinetics.

  • It's the National Health Service as explained here

  • Srry - UK National Health Service !

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