Looking for words of wisdom !

[Damaged]

Drugs or no drugs? I see my Rheumy next week. I am due for Rituxan in June. It has not changed anything so far. No improvement but no side effects , so far. I know she wants to treat Lymphoma, however, mine is Tclonal not Bclonal. I do not see how it will affect it. The other issue is MTX. I discontinued in Dec. I did not want to deal with side effects for holidays but then I could not talk myself back into injections. With my gene mutations I cannot process Folic Acid. My inflammation is low but not because of drugs. Disease activity has been very high but the doctors only seem concerned with CRP levels. My fear is MTX creates a dependency so that when you stop, for surgery or infections, flare begins. My body has not done that. Inflammation not affected by MTX only Prednisone. I did not react well to it, it made me crazy. But if CRP gets high I will consider short term dose. My question is regarding Biologics . If I have not responded well to eleven drugs, when is enough , enough? I keep waiting for the next major flare. How can you plan anything? It is so frustrating. I would prefer worse case scenario. I want to know what is coming.

[Vonnie10]

I feel really sly for you change your doctor at the hospital that's awful

[Damaged in reply to Vonnie10]

I did not mean to critizis my doctor. They have truly put incredible effort into finding a combination that will work for me. Unfortunately, I am very drug resistant and to complicate matters I have multiple drug allergies. I was reading an article about Frailty and RD. It seems we have a higher rate of frailty than seniors. The other great element is they are very receptive to my input. This is more the nature of this disease. The range of severity is extreme. Delaying the diagnoses can make treatment very challenging as well. I am just not certain of when you stop. I may just still hope we stumble on the right drug for me.

[Hidden]

Hi Damaged... Unfortunately, you are in the same place a lot of folks get to. They cannot handle one or any of the standard drugs. There are alternatives like low dose naltrexone, minocycline, etc. that you can try if your doc will allow you. But if you do nothing, you really will be damaged, and potentially in a walker or wheelchair before the RA is done with you. I know that doesn't answer the question, but I guess I am saying: it's hard, but please don't give up...

[Damaged in reply to Hidden]

Very sound advise. I do realize that moving forward will likely mean a lot of new drugs which I will consider. I trust my Rheumy to do what she can. I will continue to be a patient advocate and fully participate in all aspects of treatment. I believe the system is now moving towards targeted treatment approaches. Eventually , something will work. If not well I tried. Having young adults to answer to limits options. I would not want them to think giving up is an option.

[Hidden in reply to Damaged]

=) Agreed - Giving up is an answer - just maybe not the one you really want to give them...

[jeremy76charnwood]

I have the same as yourself- T cells abnormal, I am in remission from Leukemia, I have RA and I have no Thyroid (surgery).

If this info is of any use I was on Methotrexate injections for years which I have now stopped due to scares over side effects (I have enlarged liver and spleen) and I find very little difference in flare-ups. When I do have one if I take Ibuprofen in high doses for 1-2 or 3 days depending on severity of the flare up and it goes away.

I prefer not to take regular medication for it but instead I have a GLUTEN and DAIRY free diet. This is by no means easy but I am coping.

Hope this helps

June

[Damaged in reply to jeremy76charnwood]

I am allergic to all NSAID's or Naproxen which is main ingredient. I did not respond well to Prednisone. Now I fear the next major flare. But will take it as it comes, like there was any other option 😘 I stay with non inflammatory food and am allergic to diary. Nature provided incentive to eat the right things ? I had a pet supply store prior to illness. We specialized in raw, organic and holistic products. I learned a great deal about nutrition. All helpful but clearly not a solution. I seem to tolerate Rituxan. At least no noticeable side effects. There remains a great deal of disease activity. I expected as much so I am adjusting. A return to gainful employment is unlikely. I spend several hours per day doing research. It helps keep me from going crazy. I am maintaining weight now that I am not pacing so much. My body simply will no longer allow me to go to usual stress release. I have always been a little ADD. I would spend hours scrubbing floors or walls. My son had severe asthma so I was a bit obsessive. It would often be a great way to reason out a problem ie academic or later occupational. I also slept with pen and paper by my side as sleep would often shed light on a situation. The most lasting skill I picked up in my rounds of pain treatment was Biofeedback. I learned to regulate my breathing, heart rate and ruminating. It helps me to always remain calm. Handy straight to have. I have a great public face, or had more accurate. Now I simply say, I come with sound effects. My movement is clearly abnormal and 'Ooch' a regular expression.

[jeremy76charnwood]

Hi again,

Is Co-Codimol also unsafe for you? - The only other idea was acupuncture or Chinese herbal medicine for the pain.

I have found that Mint tea with honey good for the gut- I make a pot with dried mint leaves (from Amazon site) and that does calm the gut a little.

Hope things improve for you JD