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Struggling with Rheumatoid Arthritis lately

Melensdad

Melensdad

Jerk in a Hawaiian Shirt & SNOWCAT Moderator
Staff member
I have had symptoms for Rheumatoid Arthritis since I was 24 years old. Formal diagnosis came at age 25. I've been living with the disease for 40 years, as I turn 65 late this year.

For approximately 35 years I lived, relatively pain free. I had a great doctor, who aggressively treated my arthritis early and my physical life has been pretty darn good expect for occasional flair ups, 2 to 4 times a year. But generally physically good.

Over the past 4 years I've been living in near constant pain. Started taking Humira, which worked for a little while, on that for almost 2 years. Then failed. Switched to Cymzia, that never worked. The problem is you have to be on something for roughly 6 months before they determine if it works or not, and you have to clear out the old meds for a full month before you start a new med. So 6 months really is a minimum of 8 months without medicine working and then there are insurance delays. So I was stuck with Cymzia for about a year. Now on Enbrel, exactly 51 weeks with Enbrel today.

Also, for the past several years, low level opioids combined with over the counter high doses of ibuprofen. I post a lot about coaching fencing and being active, but to be honest it all hurts. It hurts to type this. I've done almost nothing today but have taken 3 ex-strength tylenol, 9 ibuprofen, and 2 tramadol. And I skipped coaching at University of Illinois-Chicago (UIC) tonight but I am blaming not going there on snow that is falling and bad roads. Really, it is the pain that is the reason I skipped coaching.

So yesterday, due to an insurance change, I saw a new Rheumatologist. I went in with a bad attitude thinking I would stick with my prior guy and just pay the higher deductible. I walked out pretty optimistic and will be changing my drugs again.

New drug, and I'm not sure which one I will be switched to, is a different class that affects a different set of inflammation receptors that may help arrest the pain. So I'm thrilled with that. This guy may just be the 'fresh eyes' I needed to get me healthy again?

Downside is the new drug comes with worse side effects, but we can worry about that later. It would be nice to have a few pain free days again.
 
One of the ladies in the aquarobics class has it I don't know what medicine she is on she said she found a holistic doctor that helped her with diet, aerobics (in the pool was better for her), her husband put in a jacuzzi tub in for heat and massage and she says many day she is pruned from sitting relaxing.
 
Melensdad said:
I have had symptoms for Rheumatoid Arthritis since I was 24 years old. Formal diagnosis came at age 25. I've been living with the disease for 40 years, as I turn 65 late this year.

For approximately 35 years I lived, relatively pain free. I had a great doctor, who aggressively treated my arthritis early and my physical life has been pretty darn good expect for occasional flair ups, 2 to 4 times a year. But generally physically good.

Over the past 4 years I've been living in near constant pain. Started taking Humira, which worked for a little while, on that for almost 2 years. Then failed. Switched to Cymzia, that never worked. The problem is you have to be on something for roughly 6 months before they determine if it works or not, and you have to clear out the old meds for a full month before you start a new med. So 6 months really is a minimum of 8 months without medicine working and then there are insurance delays. So I was stuck with Cymzia for about a year. Now on Enbrel, exactly 51 weeks with Enbrel today.

Also, for the past several years, low level opioids combined with over the counter high doses of ibuprofen. I post a lot about coaching fencing and being active, but to be honest it all hurts. It hurts to type this. I've done almost nothing today but have taken 3 ex-strength tylenol, 9 ibuprofen, and 2 tramadol. And I skipped coaching at University of Illinois-Chicago (UIC) tonight but I am blaming not going there on snow that is falling and bad roads. Really, it is the pain that is the reason I skipped coaching.

So yesterday, due to an insurance change, I saw a new Rheumatologist. I went in with a bad attitude thinking I would stick with my prior guy and just pay the higher deductible. I walked out pretty optimistic and will be changing my drugs again.

New drug, and I'm not sure which one I will be switched to, is a different class that affects a different set of inflammation receptors that may help arrest the pain. So I'm thrilled with that. This guy may just be the 'fresh eyes' I needed to get me healthy again?

Downside is the new drug comes with worse side effects, but we can worry about that later. It would be nice to have a few pain free days again.
Click to expand...
Chronic pain medications are like marriage. It is a daily experience. The benefits have to outweigh the side effects, or it is simply not worth it. Best of luck in your new relationship.
 
Chronic pain sucks. Been dealing with back pain for 10 years. It sucks the life out of me some days. Some days, there's just not enough pain medication. It's frustrating as hell making plans then canceling them because I can't get off the chair to stand for more than a few minutes. This week it's been my lower back. I have been using a cane to get around the house and barely made it from the living room to the kitchen this morning and wasn't able to stand long enough to make coffee without pain.
 
Mesenchymal Stem Cells .... I've done two treatments for my kidneys. I know you can afford it, I would give it a try:

Mesenchymal Stem Cell-Based Therapy for Rheumatoid Arthritis - PMC

Mesenchymal stem cells (MSCs) have great potential to differentiate into various types of cells, including but not limited to, adipocytes, chondrocytes and osteoblasts. In addition to their progenitor characteristics, MSCs hold unique ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov

I get mine done through a clinic in Tijuana. They have the medical tourism thing nailed down.
 
I've never heard of stem cell treatments for RA.

Interesting. Very interesting.
 
I've done it twice now. It takes 2-3 weeks but you notice the difference. The first time was an IV treatment for my Kidneys (I have stage 5 CKD) and I just went back three weeks ago because I had a bad case of acute pulmonary congestion in December and a nagging torn rotator cuff. I'm noticing big improvements in my over all condition this week. There are "fountain of youth" effects that I notice. My hair grows faster, my skin seems to have tightened up. I was very skeptical but I don't want to do dialysis or a transplant so this was "worth the risk". Other than some "day after" nausea I haven't had any negative side effects.
 
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Looks like I will be starting RINVOQ which is described as being for treatment of "moderate to severe rheumatoid arthritis"

Good news is it is a pill rather than an injection. I'm not fond of giving myself shots in the stomach. Other good news is that it typically is supposed to work for people for which Humira, Enbrel and Cimzia do not work well and I've been on Humira and Cimzia in the past, and currently am injecting Enbrel. So switching to a pill is a good thing, and if it works for people when the injections fail, then I am in the right group for this medication.

Filled out a bunch of paperwork and took a series of blood tests this morning.

If the tests are all normal (or close enough to normal) then the process of changing drugs will start. Hopefully on the new medication in a week or two?
 
XeVfTEUtaAqJHTqq said:
I've done it twice now. It takes 2-3 weeks but you notice the difference. The first time was an IV treatment for my Kidneys (I have stage 5 CKD) and I just went back three weeks ago because I had a bad case of acute pulmonary congestion in December and a nagging torn rotator cuff. I'm noticing big improvements in my over all condition this week. There are "fountain of youth" effects that I notice. My hair grows faster, my skin seems to have tightened up. I was very skeptical but I don't want to do dialysis or a transplant so this was "worth the risk". Other than some "day after" nausea I haven't had any negative side effects.
Click to expand...
I am interested to know how the treatments worked out for your kidneys, did they improve at all ( I am at stage 4 CKD)
 
On a scale of 0 to 20, my arthritis's "rheumatoid factor" is 19.1

Almost a 'perfect' score, maybe I should try harder? :blink:

No wonder I take so many pain pills.


Screenshot 2025-02-14 at 1.03.20 PM.png
 
RitchR said:
I am interested to know how the treatments worked out for your kidneys, did they improve at all ( I am at stage 4 CKD)
Click to expand...
The stem cell doctors and studies all state that you can't re-grow damaged kidney cells. However, the stem cells tend to work as systemic anti-inflammatories (over simplification). On my last visit there was another patient getting their second treatment and they had reduced their dialysis to one day a week since their first visit. So the stem cells are probably not going to improve your EGFR but they may help with a lot other issues that caused the initial damage and/or stressing your nephritic system.

I have shifted to a moderate protein (less animal protein, smaller amounts) diet, low-sodium, and in general eat very healthy. I also recently started taking eel serum (https://medicosage.com/eel-serum/) in combination with many of the combinations mentioned in this video: (
).

I don't use a nephrologist or any doctor. I get my own blood work and source my drugs online. I'm totally NOT following the advice of medical doctors. PLEASE don't take anything I am doing as advice. I have accepted the risks and possible outcomes and would probably get a ton of condescension and criticism from any medical doctor. I'm figuring it out on my own but I also know how to read medical studies and literature and understand everything.
 
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