Rhuematoid Arthritis/Autoimmune Diseaeses

[CanadianTrotter]

After going through 18 years of chronic pain and flare ups, being tested for RA and Lupus four times only to be told the tests were negative and seeing three different RA specialists…I have now been officially diagnosed with Seronegative RA with severe Synovitus, laced with ever present fibromyalgia and the possibility of Seronegative Lupus. The only reason I’ve been recently diagnosed is because my GP got fed up after watching me go through another flare up and he started rattling cages. He sent me to a new RA basically saying “something has to be done!” This new RA sent me for tons of blood work and full body X-rays and it all came back still negative so I was back at square one and feeling defeated. Had another really bad flare up and went to GP for another five days of prednisone(which does help), he sent the report to RA and I sent her pictures of the areas affected. RA sent me for an ultrasound of my hands and feet, which were the least daily pain areas but most painful during flare ups, and it came back with advanced/severe Synovitus which is what finally caused the diagnosis. I was so relieved to finally have answers and hopefully a treatment plan I actually cried.

Now I am in my second week of aggressive treatment. I am getting methotrexate injections 1x weekly and taking oral leflunomide daily. I’ve researched and read up about the side effects and am aware of all of the blood work and other tests I’ll have to go through during treatment but I would like to hear from fellow RA sufferers and what type of treatment they’ve received, or if they’ve received the same aggressive treatment I’m having and how they’ve handled it.

I’m too relieved to be angry for this not being found long before now. I do want to know why I was fluffed off by previous RA doctors when Seronegtive RA consists of 20-30% of RA cases and why I wasn’t sent for ultrasounds years ago. I’m relieved that something is finally being done but worried about being thrown into chemotherapy drugs for treatment.

Then to top all of that off I was tested for too much protein in my blood and am now being monitored for MGUS and its complications.

https://www.mayoclinic.org/diseases-…s/syc-20352362

Any ideas, experiences or advice gladly welcomed.

[RMJacobs]

I was diagnosed with RA nearly 21 years ago. I recently added a fibromyalgia diagnosis, and have long been suspected of having lupus as well. I also have Hashimoto’s thyroiditis and Sjogren’s syndrome.

I have very little joint damage because I was diagnosed relatively quickly (about nine months after onset of severe symptoms) and my rheumatologist put me on DMARDs immediately after diagnosis. Let’s see if I can remember everything I’ve been on, in order of earliest to latest: plaquenil, sulfasalazine, minocycline, Remicade, minocycline again, methotrexate alone (maybe for a short bit?) Humira with methotrexate, Orencia with methotrexate, Kevzara with methotrexate. Some of the early meds were just brief attempts of about six months before I flunked them, Remicade ended with a massive allergic reaction after a couple of months, Humira was wonderful for about 13 years until it faded, Orencia never really worked for me, and now Kevzara has my inflammation numbers down but isn’t dealing with pain and exhaustion very well. My rheumy says the pain and exhaustion are fibromyalgia, not RA.

I’m also on mexolicam and gabapentin.

I was very lucky to be diagnosed so quickly. Most people share your experience–even seropositive people often go years waiting for a diagnosis, and it’s much worse for seronegative people. I had a sky high rheumatoid factor and one of the best rheumies in the country.

Methotrexate is a great first med. I was fearful of it, but in hindsight, should have just sucked it up and gone on it immediately and skipped some of the other non-biologic DMARDs. The injectable form is the kindest to your guts; I am on .8 cc/week and have minimal side effects. Folic acid is your friend for dealing with the few side effects that most people have with the injected form.

The goal of going on mtx quickly is to stop joint damage. Once you have damage, that’s permanent, and can only be fixed surgically. You don’t want to go there. I know someone who was diagnosed long before effective meds were available to control this beast, and she’s had so many joint replacements, I’ve lost count.

I see a lot of posts in the on line RA support groups from people who don’t want to “poison” their bodies with chemo drugs. I also see a lot of posts from people who used to have that attitude and learned the hard way that the meds are very much the lesser of evils.

For 19 of the years I’ve been dealing with this beast, I worked more than full time in a high stress job with frequent all nighters, raised my daughter, drove my ponies, rode my bike, and traveled. It wasn’t easy by any means, but I was determined. I quit working two years ago because I just couldn’t do it any more. The meds were a huge benefit. They still are, but now I’m fighting other complications. Without the meds, I would be in a wheelchair (or possibly long dead, since RA also attacks organs). I’m still out there on my bike (eight miles a day) and traveling a lot.

If you would like to continue the conversation via email, PM me your email address and I’ll send you mine.

Rebecca

[cayuse]

I am sorry to hear this, CT.
It took over a decade for me to get a DX. I have Psoriatic Arthritis which is similar to RA. No one would listen until I sustained permanent joint damage from a flare up. I cannot tolerate the
DMARDs/biologics so I am currently on plaquenil. Finding the right drug can be a hit or miss proposition, so don’t give up if the first one is a bad fit for you. That being said, my grandmother was on MTX for at least ten years and it worked very well for her :yes:. Jingling that you find relief ASAP!

[CanadianTrotter]

@RMJacobs

I was diagnosed with RA nearly 21 years ago. I recently added a fibromyalgia diagnosis, and have long been suspected of having lupus as well. I also have Hashimoto’s thyroiditis and Sjogren’s syndrome.

I have very little joint damage because I was diagnosed relatively quickly (about nine months after onset of severe symptoms) and my rheumatologist put me on DMARDs immediately after diagnosis. Let’s see if I can remember everything I’ve been on, in order of earliest to latest: plaquenil, sulfasalazine, minocycline, Remicade, minocycline again, methotrexate alone (maybe for a short bit?) Humira with methotrexate, Orencia with methotrexate, Kevzara with methotrexate. Some of the early meds were just brief attempts of about six months before I flunked them, Remicade ended with a massive allergic reaction after a couple of months, Humira was wonderful for about 13 years until it faded, Orencia never really worked for me, and now Kevzara has my inflammation numbers down but isn’t dealing with pain and exhaustion very well. My rheumy says the pain and exhaustion are fibromyalgia, not RA.

I’m also on mexolicam and gabapentin.

I was very lucky to be diagnosed so quickly. Most people share your experience–even seropositive people often go years waiting for a diagnosis, and it’s much worse for seronegative people. I had a sky high rheumatoid factor and one of the best rheumies in the country.

Methotrexate is a great first med. I was fearful of it, but in hindsight, should have just sucked it up and gone on it immediately and skipped some of the other non-biologic DMARDs. The injectable form is the kindest to your guts; I am on .8 cc/week and have minimal side effects. Folic acid is your friend for dealing with the few side effects that most people have with the injected form.

The goal of going on mtx quickly is to stop joint damage. Once you have damage, that’s permanent, and can only be fixed surgically. You don’t want to go there. I know someone who was diagnosed long before effective meds were available to control this beast, and she’s had so many joint replacements, I’ve lost count.

I see a lot of posts in the on line RA support groups from people who don’t want to “poison” their bodies with chemo drugs. I also see a lot of posts from people who used to have that attitude and learned the hard way that the meds are very much the lesser of evils.

For 19 of the years I’ve been dealing with this beast, I worked more than full time in a high stress job with frequent all nighters, raised my daughter, drove my ponies, rode my bike, and traveled. It wasn’t easy by any means, but I was determined. I quit working two years ago because I just couldn’t do it any more. The meds were a huge benefit. They still are, but now I’m fighting other complications. Without the meds, I would be in a wheelchair (or possibly long dead, since RA also attacks organs). I’m still out there on my bike (eight miles a day) and traveling a lot.

If you would like to continue the conversation via email, PM me your email address and I’ll send you mine.

Rebecca

I don’t mind talking on here, I actually want people to know about seronegative so they can push for it to be explored if tests continue coming back negative while showing symptoms.

Can my inflammation numbers be monitored if I’m seronegative? My RA said the next step is biologics which cost $22,000 a year. My GP tried me on Gabapentin and it helped somewhat but my body rejected it, so he was putting me on prednisone for 5 day spans 3-4x’s a month which has stopped with the new meds. I’m still taking Celebrex(for 18 years now)but am hoping to taper off it if this stuff works. I’m getting 20mg of Methotrexate(take 5g Folic Acid the day after)and the leflunamide is 20mg as well but RA Doctor doesn’t want me to start it until Dec !st to give my body time to adjust to the methotrexate.

I think the chemo drugs are also the lesser of the evils and am very open to it as long as my body doesn’t reject it and side effects are fairly minimal.

Thank you for sharing!

[CanadianTrotter]

@cayuse

I am sorry to hear this, CT.
It took over a decade for me to get a DX. I have Psoriatic Arthritis which is similar to RA. No one would listen until I sustained permanent joint damage from a flare up. I cannot tolerate the
DMARDs/biologics so I am currently on plaquenil. Finding the right drug can be a hit or miss proposition, so don’t give up if the first one is a bad fit for you. That being said, my grandmother was on MTX for at least ten years and it worked very well for her :yes:. Jingling that you find relief ASAP!

I know it sounds sad but I am extremely relieved just to have been diagnosed and have a plan!

I don’t know how they’re going to find out if I have permanent damage if nothing except Osteoarthritis showed up in my back? I had a knee scope done 18 years ago that said arthritis was beginning to form yet the X-rays picked up nothing. They’re assuming that my RA is genetic and environment has worsened it so when I relocate to the maritimes I should feel a difference from less pollution.

Sorry you are suffering as well, I’ve read up on PA and it’s a nasty one as well. Thank you for sharing!

[CanadianTrotter]

RMJacobs…do you have nodules with yours? I’m full of them plus I have several fluid cysts in my knees plus a ganglion cyst in my right knee.

[Zu_Zu]

Sending huge JINGLES to ALL of you ~

AO for treatments that offer relief ~

((hugs)) of support ~

[RMJacobs]

CT, I’m not sure of the answer to your inflammation question. I’ve read varying opinions on the subject of inflammation in general. I think for most people inflammation measures operate independently of being seropositive or seronegative, but I’m just not sure. I never needed to know since I’ve had a sky high rheumatoid factor all along. I do wonder about the accuracy of inflammation numbers in general, though, because my pain levels are still so high in spite of my numbers looking good. Dammit, it feels like inflammation to me.

My personal choice is to never take prednisone. It’s that or prison. I react very badly to a tiny dose; you would be hearing about me on the news if I took it. I was on half a milligram every other day many years ago, and kept getting furious at my husband and daughter over absolutely nothing. I stayed away from people until I got it out of my system. I also feel the more normal prednisone side effects are not worthwhile for me, since it doesn’t stop joint damage.

Do you have coverage for biologics? For people in the US on private insurance (= non-government), copays can be minimal or zero due to manufacturer support. Since I’m on a new med that the manufacturer is trying to get out into the market, the manufacturer completely covers my copay. When I was on Humira and then Orencia, those manufacturers covered all but $5 per month. It’s a good thing as it would be extremely expensive otherwise on my current plan. I’ll be totally screwed when I go on Medicare in a couple of years, because Congress, in its asinine lack of wisdom, doesn’t allow manufacturer copay support for anyone on a government program such as Medicare or Medicaid. I’ll probably need to switch to something delivered via infusion, as the copay structure for infusions is entirely different on Medicare. But who knows–a lot can change between now and then.

Rebecca

[CHT]

Thank you for sharing your experience. I will need to look more into this Seronagative. I have never heard of it. I have an Auto-immune connective tissue disease, but not 100% sure on which one, as my tests came back inconclusive, and I just got tired.

I am NOT currently on anything, as I was experiencing side effects, and seem to be doing ok managing with physio and diet. I used to be on a variety of things, mostly for my related GI issues.

If you have a Chronic Pain clinic in your area, I highly recommend it! The one I have access to as physiotherapists, occupational therapists, psychologists, recreational therapists, and linked me to a dietician.

Diet can play a roll in auto-immune diseases, as some foods (and smells) can trigger immune reactions, or can cause related neuropathies.

I hope you find relief and continue to improve.

[CanadianTrotter]

@CHT

Thank you for sharing your experience. I will need to look more into this Seronagative. I have never heard of it. I have an Auto-immune connective tissue disease, but not 100% sure on which one, as my tests came back inconclusive, and I just got tired.

I am NOT currently on anything, as I was experiencing side effects, and seem to be doing ok managing with physio and diet. I used to be on a variety of things, mostly for my related GI issues.

If you have a Chronic Pain clinic in your area, I highly recommend it! The one I have access to as physiotherapists, occupational therapists, psychologists, recreational therapists, and linked me to a dietician.

Diet can play a roll in auto-immune diseases, as some foods (and smells) can trigger immune reactions, or can cause related neuropathies.

I hope you find relief and continue to improve.

Yes, please look into it.

The insurance company of the person that hit me with her car paid for a personal pain management counsellor and tech to come into my home during my recovery, physio sent me over the edge and incapacitated me and the psychologist said I didn’t need him:lol:. Both my RA doc and GP said that physio might be helpful in the future but both recommend against it currently, they’re focusing on the drug treatment. I’m interested in looking into the foods and smells that could be triggers and will mention it to my doctors.

Thank you for your response and input, I hope you improve as well!

[CanadianTrotter]

@RMJacobs

CT, I’m not sure of the answer to your inflammation question. I’ve read varying opinions on the subject of inflammation in general. I think for most people inflammation measures operate independently of being seropositive or seronegative, but I’m just not sure. I never needed to know since I’ve had a sky high rheumatoid factor all along. I do wonder about the accuracy of inflammation numbers in general, though, because my pain levels are still so high in spite of my numbers looking good. Dammit, it feels like inflammation to me.

My personal choice is to never take prednisone. It’s that or prison. I react very badly to a tiny dose; you would be hearing about me on the news if I took it. I was on half a milligram every other day many years ago, and kept getting furious at my husband and daughter over absolutely nothing. I stayed away from people until I got it out of my system. I also feel the more normal prednisone side effects are not worthwhile for me, since it doesn’t stop joint damage.

Do you have coverage for biologics? For people in the US on private insurance (= non-government), copays can be minimal or zero due to manufacturer support. Since I’m on a new med that the manufacturer is trying to get out into the market, the manufacturer completely covers my copay. When I was on Humira and then Orencia, those manufacturers covered all but $5 per month. It’s a good thing as it would be extremely expensive otherwise on my current plan. I’ll be totally screwed when I go on Medicare in a couple of years, because Congress, in its asinine lack of wisdom, doesn’t allow manufacturer copay support for anyone on a government program such as Medicare or Medicaid. I’ll probably need to switch to something delivered via infusion, as the copay structure for infusions is entirely different on Medicare. But who knows–a lot can change between now and then.

Rebecca

I can relate to that! When we feel pain and symptoms yet are told it’s nothing because their tests say so.

I was taking 50mg of prednisone and although it didn’t take all of the pain away it did offer relief. I was also on a high dose years ago for a severe allergic reaction and it saved my life.

I’m fully covered for my current treatment but may have to look into another company to cover the biologics…but someone will. I was just floored at the cost of them. :eek:

[RMJacobs]

I forgot to answer the nodule question yesterday. I’ve had them off and on. I haven’t had many, but the ones I had were extremely painful because of location. I have a lot of trouble with my left elbow, and had one there. Once my RA got under control when I was on Humira, it went away. These days, I have one on my foot that drives me nuts. But then, my feet are pretty awful in general.

Rebecca

[CanadianTrotter]

@RMJacobs

I forgot to answer the nodule question yesterday. I’ve had them off and on. I haven’t had many, but the ones I had were extremely painful because of location. I have a lot of trouble with my left elbow, and had one there. Once my RA got under control when I was on Humira, it went away. These days, I have one on my foot that drives me nuts. But then, my feet are pretty awful in general.

Rebecca

Yeah, some of the numerous nodules I have right now are in some very sensitive areas near bones. I’m hoping they go away.

The other question I have is about the Synovitus…does that repair and go away or does it stay as permanent damage? Plus I have some thickened tendon sheaths in my hands, is that permanant or does that diminish with treatment over time?

The MGUS I was diagnosed with was a bit scary and eye opening. The haematologist told me that they just recently started to detect high proteins in people’s blood work that has led to this problem and that only 5% of the world develops it and only around 1% advance and develop multiple myeloma or a type of nerve disease from it.

[RMJacobs]

Sorry, I don’t know the answer to your questions on permanent damage. I think maybe tendon sheaths would get better–I’ve had some of mine injected with cortisone (to relieve trigger finger). I have one trigger finger that wasn’t injected, but it got better on its own. I’m not sure if it’s the same situation you are describing, though.

Rebecca

[CanadianTrotter]

@RMJacobs

Sorry, I don’t know the answer to your questions on permanent damage. I think maybe tendon sheaths would get better–I’ve had some of mine injected with cortisone (to relieve trigger finger). I have one trigger finger that wasn’t injected, but it got better on its own. I’m not sure if it’s the same situation you are describing, though.

Rebecca

I get trigger finger in both hands, annoying isn’t it? I’ll ask my RA Doctor during my next appointment about how much permanent damage I have accumulated.

[cayuse]

I get trigger fingers, too! It is the weirdest feeling when they snap into place. Thankfully injecting them works.
Does anyone get sores in their mouth, like cankers, that go along with flare ups? I have been suffering off and on
from these damn things for years and have been told that they are common in auto immune related conditions.

[CanadianTrotter]

@cayuse

I get trigger fingers, too! It is the weirdest feeling when they snap into place. Thankfully injecting them works.
Does anyone get sores in their mouth, like cankers, that go along with flare ups? I have been suffering off and on
from these damn things for years and have been told that they are common in auto immune related conditions.

I’ve never had mine injected, I’ve always waited for them to relax and slip back into place. It usually takes a little over a week so I may ask about injections the next time it happens. The one RA Doctor in my past that said I didn’t have RA saw my trigger finger and also found a big cyst and said, “I can take care of that with surgery!” I asked her what were the chances of the cyst coming back and did she intend on operating every time one did come back? She knew the answers and the dollar signs quickly left her eyes.

I just got over a small case of thrush but have now developed a few small sores on the inside of my mouth towards the back where my wisdom teeth used to be. I’m in the middle of a flare up but I also just started the methotrexate injections two weeks ago and thought the sores might be a side effect’ll ask my GP Wednesday when I go for my 3rd injection.

Do you use Nystatin for your mouth sores? I always have a bottle of it on hand for thrush, I can always tell when it’s starting so I use the Nystatin before it takes hold and gets worse.

I used to get a lot of cankers as a child but seemed to grow out of them. As a young adult until now I get thrush fairly often, in fact I have always been susceptible to infections which is opposite to when I was a child. As a child I was never sick and never had measles, mumps or chicken pox and always chalked my poor immune system as an adult to having children and bad environmental factors of living in a big city. Now with finally getting the RA and Lupus diagnoses things are starting to make sense and fall into place, I’m relieved but it’s difficult not to be upset that I had these things for so many years and went untreated.

[cayuse]

I have used nystatin years and years ago, when I was a kid and it worked great.
I kept complaining to various doctors about these sores over the past ten years or so and just get the “canker” explanation. All this
Fall I had a spot that would not heal, it was there about 8 weeks. Finally last week I went to a Ear, Nose, Throat doc who LISTENED and she looked at it and immediately
biopsied it. Thankfully it was negative, but it showed a “probable fungal component” which the assistant who relayed the message said the MD would discuss at my follow-up.
So MAYBE some relief is in sight. Hopefully.
The tongue biopsy sucked big time but I bet Mr. Cayuse was happy :D. I gave his ears a rest as I could hardly talk for two days!

[RMJacobs]

I have always had canker sores in my mouth, even as a kid. When I started methotrexate, the cankers went crazy. I finally seem to have gotten to a folic acid level that keeps them at bay–I’m up to four mg per day. I rinse with salt water every morning, and clean my teeth (dentures) immediately after eating. All those things help, but they never seem to be entirely eliminated. They really suck with dentures.

As for trigger finger, my worst one was a problem for months until I had the tendon sheath injected. That was about 18-19 years ago, and it hasn’t recurred in that finger.

Rebecca

[shiloh]

OMG! OP, you poor thing - what a way to have to live. BUT I am happy that you finally finally got a real diagnosis and have some answers. I don’t think people who are normally healthy get what people like yourself and others on this post (and to a certain extent myself) have to go thru. None of us wants to be sick or in pain! We want answers, we want to be reassured that we what are going thru is real and not some imaginary thing. And no, it isn’t fun and I doubt that any of us needs that much attention.

I used to work in ER and I cannot tell you how many times I have seen people faking horrible diseases just for attention. They ONLY come to the ER and will actually refuse any genuine help. My mother and all the women on her side of the family are like that. Claiming cancers, etc - my mother is claiming RA and she doesn’t even know anything about the disease; she just makes shit up for attention and to make people do what she wants or feel sorry for her. Infuriating. If she only knew…….To get people like that to understand even half of what you all are going thru - or even suffer half of what is happening to you - maybe things would change.