Anyone dealing with RA?

[BOBOT]

Over 2 months ago I suddenly succumbed to some form of rheumatoid arthritis, inflammatory RA, or other flavor of auto-immune disease. It's put a real constraint on what I can do, as one foot and one hand (my dominant right) are swollen and stiff. So I'm nearly sedentary much of the time, which leads to other problems over time. I'll be starting on a course of medication this week, but it will probably be a while before I see much relief.

Other folks are dealing with things far worse, so I try to keep things in perspective, but it's getting me down.

 

[MichaelB]

Good luck with your RA. Don’t let it get you down, it’s not the end of the world. I’ve had it for >20 years now and I’m still fighting.

I have a stretching routine that is very helpful and try to walk 3 miles every day. Staying active is critical.

The stiffness you are experiencing should go away with some anti inflammatory meds. When I was first diagnosed I couldn’t turn the key to start my car or unlock the door. It took about 2 months after treatment began for the swelling to subside. I still have limited rotation of my wrists and shoulders but you learn to deal with it. For example, Kindle on a stand instead of holding a book.

 

[braumeister]

A very good friend recently passed away after an entire lifetime of dealing with that. She had five hip replacements, four knee replacements, and a reputation for bravery from several rheumatologists.
She was a wonderful person, and the one thing she always emphasized to those who asked was that the most important thing was to stay as active as you possibly can. It will often be painful, and always difficult, but the more movement you can put into your life the longer you'll have it.

Sorry for what you're going through but best wishes for dealing with it.

 

[AudiDudi]

Not knowing where the swelling is, it almost sounds like Gout. I get it occasionally in my right big toe and both ankles.

 

[engineernerd]

I don't know myself, but some studies have shown a benefit from curcumin. Also curcumin is somehow made much more effective by the concurrent presence of some piperacin.

Curcumin is in cumin and piperacin is in black pepper, so the low-cost low-risk way to try this is to buy cumin powder and ground black pepper from an Indian grocery (they sell larger quantities, i.e. one or two pounds, at reasonable prices), and take those together. Only a small amount of black pepper is needed, I don't remember the exact proportion but 10-15% seems about right.

The main problem with supplements is they may not contain what they claim to contain. Whereas cumin powder is cumin powder. Not too much incentive (yet?) to put anything else in those bags of spice.

 

[Koolau]

DW has struggled with osteoarthritis since age 29. It can be debilitating with bad days and (thankfully) better days. Not as bad as RA but lots of pain and limited movement.

Here is hoping you find the right doctors and meds to help your situation. Breakthroughs are coming fast, so you may soon look back at this as a temporary set back. Blessings to you as you fight your way through. Please keep us informed as to your progress. We care.

 

[Dtail]

Hope you can some relief through medicine and stay active.

 

[MichaelB]

There is no cure for RA. It is treated using medications originally developed for other conditions, and many of them are quite harsh with significant side effects. My rheumatologist tried 3, none of which worked. He then suggested not trying others, as the side effects were as serious as the RA.

One option to deal with the current inflammation is a prednisone pack. It’s a 10 day steroid application. Steroids are dangerous a definitely not to be taken for longer periods, but they do have an immediate impact, and if only taking the one 10 day pack, is not harmful. Once the inflammation subsides is much easier to control with OTC antiinflammatories such as Aleve.

 

[sailor]

I don't know myself, but some studies have shown a benefit from curcumin. Also curcumin is somehow made much more effective by the concurrent presence of some piperacin.

Curcumin is in cumin

I think curcumin is in turmeric and not cumin (different spice).
I use homemade turmeric/black pepper paste to help with mild RA and it seems to be working for me.
Improvement after about 3-4 weeks of twice a day of maybe half teaspoon.
When I go without the paste for few weeks I get gradual onset of stiff/painful small joints (for me it's fingers and one big toe)
Paste recipe: Turmeric Life's Golden Paste Recipe for Dogs & People

 

[aja8888]

There is no cure for RA. It is treated using medications originally developed for other conditions, and many of them are quite harsh with significant side effects. My rheumatologist tried 3, none of which worked. He then suggested not trying others, as the side effects were as serious as the RA.

One option to deal with the current inflammation is a prednisone pack. It’s a 10 day steroid application. Steroids are dangerous a definitely not to be taken for longer periods, but they do have an immediate impact, and if only taking the one 10 day pack, is not harmful. Once the inflammation subsides is much easier to control with OTC antiinflammatories such as Aleve.

I've told the story here about how too many doses of Prednisone ruined my DW's bone density. Bad news medication, for sure. Medicare would not allow her to have any more prescriptions at one time during one recovery. It's great for instantly opening lungs when you can't breathe with having COPD.

 

[engineernerd]

I don't know myself, but some studies have shown a benefit from curcumin. Also curcumin is somehow made much more effective by the concurrent presence of some piperacin.

Curcumin is in cumin and piperacin is in black pepper, so the low-cost low-risk way to try this is to buy cumin powder and ground black pepper from an Indian grocery (they sell larger quantities, i.e. one or two pounds, at reasonable prices), and take those together. Only a small amount of black pepper is needed, I don't remember the exact proportion but 10-15% seems about right.

The main problem with supplements is they may not contain what they claim to contain. Whereas cumin powder is cumin powder. Not too much incentive (yet?) to put anything else in those bags of spice.

Oops, curcumin is in TURMERIC, not cumin! Brain f**t yesterday sorry!

Turmeric stains things yellow. Softscrub with bleach cleans the stains off laminate countertops.

 

[warbial]

There is no cure for RA. It is treated using medications originally developed for other conditions, and many of them are quite harsh with significant side effects

That was true in the 20th century, but in the past few decades, newer and better medications have been developed, starting with biologics such as Remicade, Humira, and Enbrel. More recently, Janus Kinase (JAK) inhibitors such as Rinvoq offer an entirely new approach to treating autoimmune disorders. Every body is different and responds to medications differently. I found some relief with Remicade, more when I switched to Actemra, and even more this past year taking Rinvoq.

 

[warbial]

Over 2 months ago I suddenly succumbed to some form of rheumatoid arthritis, inflammatory RA, or other flavor of auto-immune disease. It's put a real constraint on what I can do, as one foot and one hand (my dominant right) are swollen and stiff. So I'm nearly sedentary much of the time, which leads to other problems over time.

That really sucks. Mine started with stiffness and swelling in my hands. I couldn't hold a pen, which made a number of everyday life tasks more difficult.

My first rheumatologist told me, "if it hurts when you exercise, exercise anyway." I wanted to punch him. But he was right. A physical therapist should be able to work with you to find exercises that you can do with your physical limitations. There was a time when I think I spent more time with my PT than with my family.

 

[Sunset]

I don't know myself, but some studies have shown a benefit from curcumin. Also curcumin is somehow made much more effective by the concurrent presence of some piperacin.

Curcumin is in cumin and piperacin is in black pepper, so the low-cost low-risk way to try this is to buy cumin powder and ground black pepper from an Indian grocery (they sell larger quantities, i.e. one or two pounds, at reasonable prices), and take those together. Only a small amount of black pepper is needed, I don't remember the exact proportion but 10-15% seems about right.

The main problem with supplements is they may not contain what they claim to contain. Whereas cumin powder is cumin powder. Not too much incentive (yet?) to put anything else in those bags of spice.

Since some spices contain heavy metals, there is a list of tested spices (by consumer reports) that are "safe"

https://www.consumerreports.org/health/food-safety/your-herbs-and-spices-might-contain-arsenic-cadmium-and-lead-a6246621494

 

[MichaelB]

That was true in the 20th century, but in the past few decades, newer and better medications have been developed, starting with biologics such as Remicade, Humira, and Enbrel. More recently, Janus Kinase (JAK) inhibitors such as Rinvoq offer an entirely new approach to treating autoimmune disorders. Every body is different and responds to medications differently. I found some relief with Remicade, more when I switched to Actemra, and even more this past year taking Rinvoq.

Yes, but also no. These drugs supress the autoimmune system and for the most were developed to treat the inflammatory conditions . They don’t cure the disease, they treat inflammation. What causes RA is still unknown and there is, so far, no cure.

My greater point is that the side effects can be quite harsh, as bad or worse than the disease. In my opinion that continues to be true with the newer pharmaceuticals and biologics as well. Suppressing the autoimmune system is serious and possibly excessive for many cases.

RA is a complex disease and difficut to treat.

 

[BOBOT]

Thanks for your replies and support. I should be starting on Cyltezo, a Humira biosimilar, this week. Have no expectations but hoping for improvement.
In the meantime just keepin' on keepin' on...

 

[wdwwildbill]

I've been on Humira for over 10 years for my r/a. They usually don't last that long and then you have to try another one. It helps me ALOT ! but of course they can be dangerous. Not easy but keep moving !!!!

 

[harllee]

DH has a similar disease--Psoriatic arthritis. It was mainly in his knees but total knee replacement fixed them. Humira has been a miracle for him. Good luck.

 

[Koolau]

I thank God for the evil, money grubbing drug companies because they have made DW's life "livable" over the years. She has Osteo, but it has at times been severe. It seems to be in a kind of remission now - just because - docs can't 'splain it. So she gets by with Tylenol. But there was a time when she was trying every new NSAID and she found a couple that made life worth living again.

I hope for folks with RA that the new "miracle" drugs keep coming and become more and more effective (and less dangerous) for you. I'm sure if there's a dollar to be made, the drug companies are w*rking on it. Hold on, help is coming.

 

[skyking1]

My wife was diagnosed about 11 years ago.
Since then she has been rotating through a whole slew of RA medication. She takes one until it no longer provides relief, and then the rhuematolgist tries another one. She is about to start infusions and we are hopeful.

 

[jkort789]

Egg Shell Membrane supplement
Not a lot of very scientific data on this.
Myself and 3 associates dealing with osteo arthritis all have found substantial pain relieve in arthritic knees and toes. Associates and I are all very active with numerous sporting activities.
(I know original poster was talking RA.)

 

[Koolau]

Egg Shell Membrane supplement
Not a lot of very scientific data on this.
Myself and 3 associates dealing with osteo arthritis all have found substantial pain relieve in arthritic knees and toes. Associates and I are all very active with numerous sporting activities.
(I know original poster was talking RA.)

View attachment 54363

Have you tried any kind of blind test to see if there is a difference with/without the supplement? I'm always looking for anything for DW's osteoarthritis.

 

[jkort789]

No have not done a blind test.
Would not argue with the potential of the placebo effect!