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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.
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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.
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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)
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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.
 
Arthritis update for me.

Started taking Rinvoq, which is a different class of drug than Humira/Enbrel/Cimzia and generally considered a much stronger anti-arthritis drug. Started taking it Feb 20th. It is supposed to be working well at 3 months. It is now June 24, so 4 months of treatment.

Daily pain, general fatigue from pain, both hands, wrists, elbows and shoulders. Taking Tramadol, typically 2x per day, 6x ibuprofen, and a couple shots of whiskey at night. I’m always worn out, unless I’m heavily caffeinated. I never sleep well. I think the fatigue and sleep are related to the constant pain.

I sent a message to my doctor detailing this, and saying if I don’t have improvement at 6 months then we need to try something else.
 
Melensdad said:
Arthritis update for me.

Started taking Rinvoq, which is a different class of drug than Humira/Enbrel/Cimzia and generally considered a much stronger anti-arthritis drug. Started taking it Feb 20th. It is supposed to be working well at 3 months. It is now June 24, so 4 months of treatment.

Daily pain, general fatigue from pain, both hands, wrists, elbows and shoulders. Taking Tramadol, typically 2x per day, 6x ibuprofen, and a couple shots of whiskey at night. I’m always worn out, unless I’m heavily caffeinated. I never sleep well. I think the fatigue and sleep are related to the constant pain.

I sent a message to my doctor detailing this, and saying if I don’t have improvement at 6 months then we need to try something else.
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Hopefully, the "something else" isn't formaldehyde." Undertakers are lousy doctors.

It is a shame that after so many decades of medical science and improvements in our healthcare, that the alleviation of simple chronic pain eludes us.

I sympathize with you as lately my rough life of working with and injuring my hands and body, has brought similar symptoms to my hands and back. I have taken an aspirin a day since my 30's when I was diagnosed with High blood pressure. Now I am up to four a day plus an ibuprofen, and too often a shot of Scotch.
The pain is enough. But it is the slowing down that affects me.

You have my sincere sympathy.
 
Melensdad said:
Started taking Rinvoq, which is a different class of drug than Humira/Enbrel/Cimzia and generally considered a much stronger anti-arthritis drug. Started taking it Feb 20th. It is supposed to be working well at 3 months. It is now June 24, so 4 months of treatment.

Daily pain, general fatigue from pain, both hands, wrists, elbows and shoulders. Taking Tramadol, typically 2x per day, 6x ibuprofen, and a couple shots of whiskey at night. I’m always worn out, unless I’m heavily caffeinated. I never sleep well. I think the fatigue and sleep are related to the constant pain.

I sent a message to my doctor detailing this, and saying if I don’t have improvement at 6 months then we need to try something else.
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Damn. Your pain regimen would ruin most people. I'm surprised you're still standing.
 
bczoom said:
Damn. Your pain regimen would ruin most people. I'm surprised you're still standing.
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Got no choice. Either stand or give up.

Not planning to give up. Got too much life left in me. National championships for fencing are next week, and Kobe is only 5, still waiting for a grandkid and that doesn't seem to be happening soon. So life goes on! Pain or not. 2 Tramadol today, plus 8 Advil, plus maybe 5oz of very good limited edition Kentucky bourbon.

Giving up is not an option. Life goes on. Have lots of stuff to accomplish, just planted more blueberry bushes. Trimmed back the paths through the woods. Some promising young fencers to teach. Need to get more done.

Pain only hurts when you let it take over.
 
tommu56 said:
@Melensdad my motto is "It's better to wake up in pain than not waking up at all"
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Agreed.

I was actually talking with a good friend/fencing coach yesterday before practice. I can sit around doing nothing in pain. Or I can do something in pain. The drugs mask, control the pain, but I'm looking for a drug that actually works so I don't need the pain meds.

But I'd rather wake up and deal with the pain than not wake up!
 
Well you do have an option that I think you should consider. I discussed it with you via dm. You really should give it a try.
 
FYI my wife is having an outbreak of RA. in her hands. Probably less acute than yours. Her Doctor prescribed, Hydroxychloroquine, which I believe is for Malaria. Just a thought !!!! Good Luck.
 
I wish I could go without pain meds. I'm on naproxen morning and night for muscular pain. Baclofen for nerve pain to control crps. Along with mmj in microdoses throughout the day.

If I miss a naproxen in the morning, by lunchtime my back burns so much I can't stand. I ran out of my Baclofen on a Friday and went the weekend without it. By Sunday I was experiencing full body muscle spasms.

As for the mmj, it's the reason why I don't travel in the states anymore. Sure, it might be legal in some states but not others. We last went down for the weekend for an outdoor 3 day concert event. I couldn't take it with me so was in severe pain all weekend to to point where I couldn't stand unassisted and was reduced to using a mobility scooter to get around. As I was in so much pain, we decided to stop going every year.

When we went to Mt Rushmore in 2019, my family doctor prescribed me nabilone for pain. It's a synthetic version of medical Marijuana that is supposed to mimic the effects of mmj. What it did was turn me into a zombie for 3 days during the trip to where I could barely function but was still in pain. I stopped taking it and just suffered. It's frustrating going on vacation and having to bow out of activities with the family because you're too sore to walk more than 20 feet.

Prescription pain medication you say? After my accident I was prescribed oxys for pain. Didn't do anything for pain but I was a zombie all day unable to do anything. They switched me to another pain med that did nothing for pain but as a lovely side effect caused rapid weight gain which further restricted my mobility. So I have been on the same pain meds for 5 years now and haven't had to use my mobility scooter once during that time. I have been way more mobile and able to function somewhat normal throughout the day.

I'm still wide awake most mornings at 5am because of a burning back.
 
gabbott3 said:
FYI my wife is having an outbreak of RA. in her hands. Probably less acute than yours. Her Doctor prescribed, Hydroxychloroquine, which I believe is for Malaria. Just a thought !!!! Good Luck.
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I'm actually allergic to Hydroxychloroqine. My RA specialist, 38-ish years ago, put me on that. I broke out in a sunlight rash. Every place on my body where skin was exposed to sunlight swelled up, and was irritated, etc.

That is a med that used to be very commonly prescribed for early stage RA, I think it was often used either before, or in conjunction with other meds. Hopefully it helps her. I never knew if it would have worked with my arthritis because my allergic reaction was so immediately noticeable that I was pulled off the drug quickly.
 
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NorthernRedneck said:
I wish I could go without pain meds. I'm on naproxen morning and night for muscular pain. Baclofen for nerve pain to control crps. Along with mmj in microdoses throughout the day.

If I miss a naproxen in the morning, by lunchtime my back burns so much I can't stand. I ran out of my Baclofen on a Friday and went the weekend without it. By Sunday I was experiencing full body muscle spasms.

As for the mmj, it's the reason why I don't travel in the states anymore. Sure, it might be legal in some states but not others. We last went down for the weekend for an outdoor 3 day concert event. I couldn't take it with me so was in severe pain all weekend to to point where I couldn't stand unassisted and was reduced to using a mobility scooter to get around. As I was in so much pain, we decided to stop going every year.

When we went to Mt Rushmore in 2019, my family doctor prescribed me nabilone for pain. It's a synthetic version of medical Marijuana that is supposed to mimic the effects of mmj. What it did was turn me into a zombie for 3 days during the trip to where I could barely function but was still in pain. I stopped taking it and just suffered. It's frustrating going on vacation and having to bow out of activities with the family because you're too sore to walk more than 20 feet.

Prescription pain medication you say? After my accident I was prescribed oxys for pain. Didn't do anything for pain but I was a zombie all day unable to do anything. They switched me to another pain med that did nothing for pain but as a lovely side effect caused rapid weight gain which further restricted my mobility. So I have been on the same pain meds for 5 years now and haven't had to use my mobility scooter once during that time. I have been way more mobile and able to function somewhat normal throughout the day.

I'm still wide awake most mornings at 5am because of a burning back.
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Brian I honestly wonder sometimes if I should just accept the fact that I need the pain meds and take them.

Fortunately for me, I tolerate the tramadol very well, it works well, especially combined with advil (ibuprofen) and I don't seem to have any brain fog issues.

The problem is that RA is a progressive disease. Covering the pain doesn't stop the progression of the disease, so if I can't find a drug that slows or stops the disease, I will end up with, at a minimum, future surgeries of the hands and likely my feet. Deforming joints that ultimately could freeze or simply severely limit movement. Etc etc etc

So my bitching is more about the disease and the inability to (over the past few years) halt the progression, to avoid becoming crippled. If it was only the pain I'd just eat the tramadol and advil like M&Ms and go on with coaching fencing. Masking the pain simply delays finding the correct mix of medicines to halt the degenerative disease, which has been diagnosed as "moderate to severe".

I guess I'm lucky in that it was well controlled for 35 year, but the past 5 have been a downward spiral. Humira injections for a year and a half. Cimzia injections for 6 to 8 months. Enbrel injections for another year. And you have to 'flush' your system of the prior drug before starting the next, so add several more months for each. Now a different class of drug, Rinvoq, much stronger, doesn't seem to be doing much.
 
I'm amazed at you both (Bob and Brian) after hearing how much pain you both are in you both are so active and get so much done. Very impressive.
I have severe stenosis in my back. I am in major pain after walking 50ft. Sitting alleviates the pain. Pain pills do not touch it. Medical MJ does not help. Weird thing is when shopping if I grab a shopping cart I can walk pretty much without pain. It takes the pressure off the back. Last April I had radiofrequency ablation done on the six lower vertebrae. It seemed to relieve some of the pain, I could walk further without the pain. The doctor said it could last for 2 years at best. Or one year, or ever six months. It varies per person. After two month it does not seem to help me much, if at all.
 
bczoom said:
We all smoke pot now and then. ;) Spill your guts. :)
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I actually don't like pot. Micro-dosing magic mushrooms actually works really well for my pain. My tolerances are high enough now that I don't really get high.

But stem cells are where it's at. Total game changer.
 
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