WLS with Fibromyalgia and Arthritis of Unknown Origin

[gowalking 10,790]

Just as an aside...methotrexate did nothing for me and I went off them. Am taking low dose steroids now and honestly, they are not working. I see my rheumatologist next week and will discuss upping the dose, or going off them.

I know that I have been indulging more than I should with some food items I need to eat less often, but I also find that even when I eat clean, I can't seem to get those ten pounds off either...so I'm wondering if the meds are making it more difficult for me to get back to that 120-125 range that I'd prefer to be at.

[LisaMergs 2,854]

Just as an aside...methotrexate did nothing for me and I went off them. Am taking low dose steroids now and honestly, they are not working. I see my rheumatologist next week and will discuss upping the dose, or going off them.

I know that I have been indulging more than I should with some food items I need to eat less often, but I also find that even when I eat clean, I can't seem to get those ten pounds off either...so I'm wondering if the meds are making it more difficult for me to get back to that 120-125 range that I'd prefer to be at.

Oh. Consider being on-even low dose- pred the reason you're not getting those last few off.

It's the best worst drug on the market. Period. If you were taking the methotrexate in pill form, I'd suggest going to the shots. They work much better. Another option would be Plaquenil.

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[theantichick 2,204]

Several of the RA boards I'm on call prednisone "Satan's little tic tacs". When we were getting my diagnosis and trying to find a med that worked, I begged my rheumy for steroids. Without going into the long drawn-out story, I'd been having symptoms for a year or more but they were atypical. One of my hellish symptoms was plantar fasciitis that turned into these incredibly painful knots in the arches of my feet. In a desperate attempt to figure out what was going on and get some relief as I was an ER nurse at the time, I got a doc to give me a round of steroids. I hadn't realized that my pain levels had gotten so high... I would tell people I lived at a 3 or 4 with all the joint issues I've had most of my life. The steroids brought my pain down to a 0 to 1 for the first time in decades. No telling how long the auto-immune was a factor. I had actually been living at a 6 to a 7. I didn't need a lot, just 20mg a day to get it under control and 10mg a day to maintain. I seriously considered black market prednisone. I understood what junkies feel for the first time.

Rheumy held the line though, and it was a good thing because while on the pred, my bloodwork wasn't showing anything. Got me off the pred for about 2months, and my bloodwork popped.

Methotrexate helped, but not enough. Now I wish we'd tried the shots. I don't have an issue with needles, and the pills were rough. I had what we think was an allergic reaction to mtx so now we can't go back to it.

When we started talking biologics, I asked my rheumy about WLS. She was enthusiastically for it. The data isn't all in, but she said there's good evidence that the stomach fundus is responsible for a bunch of inflammatory factors. And of course all the fat tissues and the hormones they secrete is responsible for a bunch more. She said it wasn't likely to put me in remission, but it could really help.

Going off my sulfasalazine (which was working some but not 100%) for the 3 weeks needed before surgery, I thought I was going to go nuts with the pain. My surgery pain by day 3 wasn't as bad as my arthritis pain. But it's been gradually getting better. I see my rheumy next week to get a date to start biologics (I think she said 3 mon after surgery) and see if I go back on Sulfasalazine in the meantime. And of course bloodwork. I'm curious to see where my factors are now because my pain is pretty much back where it was medicated.

It's a roller coaster. I don't expect remission, but if the VSG helps the meds work better so I can function better (and get active again) then it's worth every bit of it. And of course I'd welcome remission if it comes.

[LisaMergs 2,854]

Several of the RA boards I'm on call prednisone "Satan's little tic tacs". When we were getting my diagnosis and trying to find a med that worked, I begged my rheumy for steroids. Without going into the long drawn-out story, I'd been having symptoms for a year or more but they were atypical. One of my hellish symptoms was plantar fasciitis that turned into these incredibly painful knots in the arches of my feet. In a desperate attempt to figure out what was going on and get some relief as I was an ER nurse at the time, I got a doc to give me a round of steroids. I hadn't realized that my pain levels had gotten so high... I would tell people I lived at a 3 or 4 with all the joint issues I've had most of my life. The steroids brought my pain down to a 0 to 1 for the first time in decades. No telling how long the auto-immune was a factor. I had actually been living at a 6 to a 7. I didn't need a lot, just 20mg a day to get it under control and 10mg a day to maintain. I seriously considered black market prednisone. I understood what junkies feel for the first time.

Rheumy held the line though, and it was a good thing because while on the pred, my bloodwork wasn't showing anything. Got me off the pred for about 2months, and my bloodwork popped.

Methotrexate helped, but not enough. Now I wish we'd tried the shots. I don't have an issue with needles, and the pills were rough. I had what we think was an allergic reaction to mtx so now we can't go back to it.

When we started talking biologics, I asked my rheumy about WLS. She was enthusiastically for it. The data isn't all in, but she said there's good evidence that the stomach fundus is responsible for a bunch of inflammatory factors. And of course all the fat tissues and the hormones they secrete is responsible for a bunch more. She said it wasn't likely to put me in remission, but it could really help.

Going off my sulfasalazine (which was working some but not 100%) for the 3 weeks needed before surgery, I thought I was going to go nuts with the pain. My surgery pain by day 3 wasn't as bad as my arthritis pain. But it's been gradually getting better. I see my rheumy next week to get a date to start biologics (I think she said 3 mon after surgery) and see if I go back on Sulfasalazine in the meantime. And of course bloodwork. I'm curious to see where my factors are now because my pain is pretty much back where it was medicated.

It's a roller coaster. I don't expect remission, but if the VSG helps the meds work better so I can function better (and get active again) then it's worth every bit of it. And of course I'd welcome remission if it comes.

Living my life sister. I practiced dentistry for almost 20 years before I got diagnosed. Likely, the year or so prior to the RA hitting full force, I was brewing. My hands were constantly aching, not a true pain like I would come to know. Before procedures, I would have my assistant massage my hands. (She was also a nail tech and was really good at it and didn't mind!)

The last patient I saw, I was about to give him an anesthetic injection. As I was inserting the needle, my hand LITERALLY contorted, and I ended up sticking the needle into his lip. Ummmm. NOT a good thing to do. Being a good clinician, I reminded him to not move when I'm giving him a shot, said we needed to reschedule, and made an appointment with my hand surgeon for the next day. I'd had hand surgery about 10 years prior to remove a cyst.

He was the one who sent me to the rheumy, blood work, and had a dx within 2 weeks. RF, CRP, sed rate all through the roof.

Haven't been in the dental operatory as a practitioner since

I feel READY to go back to work, but fear keeps me from it. Even though I've been symptom free since surgery, I can't help but wonder how long it will last? Will I be with a patient when it decides to rear its ugly head again? Too many what ifs at this point for me.

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[LisaMergs 2,854]

I should add to the above post that the rest of my body was all aches and pains before my dx, as well, but since my life was literally my hands, I just chalked it up to turning 40....

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[theantichick 2,204]

I should add to the above post that the rest of my body was all aches and pains before my dx, as well, but since my life was literally my hands, I just chalked it up to turning 40....

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Rough. I had decided to pursue nursing as a mid-life career change, with the goal of becoming a nurse practitioner. I loved ER nursing, but especially with my primary symptom being in my feet and making it incredibly painful to stand, and treatment compromising my immune system, I couldn't stay bedside. I miss the heck out of it.

Luckily in my former life I was a data warehouse analyst, and a good one. So I changed my grad school track from NP to Healthcare Informatics (will graduate Dec 2017 god willing) and am back behind a computer. Where I didn't want to be, but at least it's an option that gets me off my feet, pays well (better than nursing), and with all of the assistive tech available, I'll be able to keep doing it as long as my brain works.

[gowalking 10,790]

I guess I was living in a bubble for a long time as I was so not aware of how many of us live with chronic pain. I still remember when my doctor did that stupid pain scale and I said my pain on one particular visit was 4-5 and he said it looked to him like my pain level was worse based on how I was walking/sitting, etc.

I reminded him that pain was subjective and since my highest pain was more than most people could bear, my version of a 4-5 would likely immobilize someone not used to living this way.

I do my best to not have it impact my life...or impact it as little as possible.

I'm glad this thread is here...to get input and advice and just comfort in knowing I'm not alone in dealing with this.

[jenjenp 63]

Hi all. I have. An autoimmune disease called polymialgia rheumatica. Took a long time to diagnose because the average age of first diagnosis is 70. And I was 46. I had actually lost 96 pounds on my own and was in the best shape of my life. But steroids for years has put me back up over 200. So I had the sleeve done 6 weeks ago. I am tapering off prednisone. May take a year. And my rheumatologist wants me to take methotrexate. I forget who mentioned taking that I know it's a chemi drug. Any bad side effects and did it work for you?

Also the original poster mentioned eyesight problems. One of the side effects of polymialgia rheumatica is giant cell something and it can blind you. Pmr. Mimics other diseases and is hard to diagnose. Needless to say my weight loss after surgery has been slow. I don't eat. Much. My rheumatologist says that the steroids make your body hold onto the weight.

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I consider myself an expert when it comes to autoimmune rheumatic diseases.

First- let's talk your prednisone:

See an endocrinologist. Pronto. I was taking 60 mg of pred a day for years. There was no weaning off, because any time I got down to 20-25mg, I literally could not function. In any capacity. Enter the endocrinologist. Because the prednisone does just as much (if not more!) damage than good, my adrenal function was gone, I had prednisone induced glaucoma as well as prednisone induced diabetes. I needed off the meds ASAP. She prescribed me ORAL hydrocortisone. It mimics- and tricks- your body into believing it is prednisone, and is MUCH easier to wean off of than the prednisone. It took a total of 2.5 months vs over a year or longer if it were the prednisone. Do this. Again, ASAP. Ask for it.

Second- methotrexate, either by pill or injection: pills made me sick, puking, typical chemo side effects. The shots did not, and they actually work much more effectively than the pills, so if given a choice, it is a once a week teeny tiny needle. Side effects- don't bother paying attention to them. The benefits far outweigh any possible adverse effects. You will need regular blood work to monitor your liver enzymes. Again, I have been on a very high dosage, so mine were often screwy.

Third: I can't imagine any surgeon doing WLS or ANY elective surgery while you are on either of these meds. I had to "wash out" before I could have my surgery, meaning get all traces of the meds out of my blood system and stored reserves. Both drugs make you more susceptible to infection and the prednisone especially makes healing hard. And keeps weight on. Again- seeing an endocrinologist will get you off the pred by using oral hydrocortisone pills.

Usually PMR goes away after a year or so. I wonder if you don't have true rheumatoid arthritis? The tests- a sed rate and C-reactive Protein screen are used for PMR as well as other autoimmune arthritis diagnosis. Just a thought.

So- don't worry about side effects of the methotrexate and get off the pred!!!

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Hi am just seeing this now. Thank you for responding. I did get off prednisone about 8 months ago. But it started to come back and about 2 months later I couldn't take it and went back on. My rheumatologist says cut down till I feel pain. Then start methotrexate. Shots. So I can continue to get off prednisone. I did have all the testing done. They did suspect fibromyalgia ms. Lupus RA etc Till all tests were done.

I will look into seeing an endocrinologist. I did tell the dr about prednisone. He said it was fine and I may lose slower. I am now 9 weeks out and lost 20 pounds. 10 more the week before surgery. I was "only" 201 day of surgery. I would like to lose faster but. I really want to get off the prednisone. Thank you and why doesn't my rheumatologist k ow about this?

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[LisaMergs 2,854]

@@jenjenp

Your last question- " why doesn't my rheumatologist know about this?"

Know about which? Lol. We covered a LOT of ground in this post!!!

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[jenjenp 63]

@@jenjenp

Your last question- " why doesn't my rheumatologist know about this?"

Know about which? Lol. We covered a LOT of ground in this post!!!

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Sorry!! About the oral steroids to taper off quickly

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[LisaMergs 2,854]

@@jenjenp

Your last question- " why doesn't my rheumatologist know about this?"

Know about which? Lol. We covered a LOT of ground in this post!!!

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Sorry!! About the oral steroids to taper off quickly

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That's what I figured...

My rheumatologist didn't know either. I think it is an endocrinologists secret lol. Seriously, it's what they do- and like all specialties, have their little "trade secrets", tips and tricks.

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[Serena89 9]

I was hoping to find more of you out and about in this site! My surgery is Monday (RNY revision from a 16 year old VBG gone awry). I was diagnosed fibro about 5 years ago and was wondering if the surgery was going to throw me into a flare. I had to give up my methotrexate 2 weeks ago and for the next 3 months and I already notice a difference! Any real fibro difference with weight loss?

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[LisaMergs 2,854]

I'm autoimmune and not only did I NOT flare, I've been in complete remission since the RNY. It is one of the reasons I had the surgery.

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[gowalking 10,790]

So...I went on low dose oral steroids less than a month ago and while my pain has lessened...I've gained nearly 7 lbs. I'm going to start to titrate myself off by going to one pill every other night and tell my rheumatologist I want off all together. I think I'd rather have the pain than the weight gain and all the potential side effects.

[FunkyMunkyBrat 205]

I was diagnosed with Fibro over 10yrs ago and had finally gotten to a point where it was manageable and I had fmla for when you had flares and needed time off work.. Then almost 4 yrs ago now in January of 2013 I got really sick with what I thought was the flu and went into what I thought was a flare.. Finally in July of that year after struggling trying to work using up all my vac time + fmla days because the pain was so horrible I went to a new doctor and ended up being diagnosed with Lymes.. And the developed Lyme induced arthritis.. So for you ladies that don't know what you have.. You might want to get tested for Lyme.. And a negative result doesn't always mean you don't have it.. I suggest you read up

Good luck with everything!!

Munky