NDR - Autoimmune disease, any Rheumatology visit advice?

TimJ

TimJ

Well-known member
When things aren't going so well what better people to seek advice from but a bunch of duck hunters. ;)
Well, my good health I was so proud of has been shot down a little lately. That little bit of arthritis in my shoulders that bothered me occasionally started to keep me from sleeping. As I thought about it other things had been hurting me. I figured it was from working out, losing 30 lbs last year and getting in good shape for a 55 year old. The Orthopedists thought differently and added everything up together. A few blood tests later he said he can't do anything for me and I have an appointment with a rheumatologist next week. I know blood tests aren't 100% for rheumatoid arthritis but it doesn't look like there are many other options it could be.

I've watched some helpful videos about taking notes in with me. I've written down several pages of pains and weird things that didn't mean anything to me a year ago but now seem obvious after seeing what early symptoms are. I might have my sister come in with me as this is a bit daunting to me and I might need someone to listen carefully. I'm not too proud to say this scares me some.

Any advice on what to talk to the doc about, meds, diet, exercise or whatever? I hadn't needed a doctor for decades, maybe I should have gone a year earlier, could have saved a lot of pain.
Listen to those aching joints, they aren't always just wear and tear.

Tim
 
Tim, take your sister with you and if she is a good fit for it have her take notes. Have her ask the doc clarify anything she didn't get completely in the notes on the first go through. I recently did this for my father in a fairly scary doctors appointment. It was extremely helpful for him afterwords to ask about things and for me to have notes. Turns out he is in the clear but it was a lot for him at the time.
 
Tim

I don't have any advice seeing as how I know very little about it. But I am sorry to hear about your diagnosis and hope the rheumatologist will be able to help you get back to feeling like yourself again.
 
Tim-like Eric, I don't have any relevant advice either, but I would do what Brandon has suggested, and have another set of eyes and ears with you and taking notes and perhaps even asking relevant questions during the visit and any future visits that you might not think of.
 
Thank you, guys. There is still like a 5% chance it isn't anything too bad, except as the prednisone I got a few weeks ago wears off I can feel a lot of the aches and inflammation coming back. I didn't know how much it hurt until it didn't for a while. Sucks getting old. I remember laughing at Harker, Sutton and the other really "Old Farts" back 20 years ago. Didn't think I'd be one of them. ;)
 
Brandon's advice to have a second person there to take note, and, if appropriate, ask questions, is spot on. I have had psoriasis, another inflammatory disease with potential for arthritic complications, since I was 15. The only other bit of advice I would give you is to ask lots of questions about prednisone side effects. I've had it 4 or 5 times for the psoriasis or asthma, and I have had some pretty serious side effects, not all of them short term. In my case, a rare, but documented side effect was that the prednisone shut down insulin production and kicked me into a diabetic emergency. I was on insulin for six months before I started producing insulin again and could go to a maintenance drug. If you notice changes in your vision or frequency of urination while on prednisone, you want to check in with your doctor right away. Don't mean to scare you, as this is a rare side effect. My mother in law has been on prednisone for rheumatoid arthritis for 20 years off and on and has never had any serious side effects.
 
Tim-

I've dealt with widespread joint pain for years with no discernible cause, despite seeing many rheums and doing a lot of bloodwork. I hope they're able to pinpoint what it is so you can get some answers. What I've learned is, diagnosis or not, I couldn't spend all my time thinking about it and trying to 'fix' it. I used to spend hours of every day fixating on it and it drove me crazy. But now I don't really think of it much. Most times I forget about it. It's just 'there' in the background.

Best things I did were:

Found ways to exercise that could exhaust me without causing symptoms to flare up. (for example, rowing machine and incline treadmill walking)
Staying at a healthy weight
 
I'd second what Jeff Reardon said and beware of any physician that will only prescribe prednisone. Yes, it will alleviate the symptoms and you will feel like superman for a short while but steroids will slowly kill you. I would inquire about biologics or infusion therapy. I have an autoimmune disease called Vasculitis that affects the lungs. Would not be here today or hunting turkey in the Black Hills without infusion therapy. Be prepared to fight your insurance company however. Hope this helps, Richard.
 
Thank you, Jeff. That was not one of the side effects I was told to watch out for. That would be scary.

Jordy, Thank you. I've been dealing with this for about a year, more if I am really honest with myself on when I first felt wrong. Thankfully I'm in good shape and maybe even too thin. Right now without the prednisone for a short time I couldn't help but think about it. I was down to just an hour or two of sleep some nights. Some of the worst pains I've ever experienced and it almost always only happened when I am resting. It got to the point that my shoulders hurt just walking. If I hadn't been exercising before I don't know where I would be at.

RM, thank you. The prednisone was only to get my shoulders and hands calmed down and be able to sleep for a while. The orthopedist who prescribed it said this was not going to be long term option at all. We shall see what the rheumatologist does. I asked my sister if she would go in with me today. I have some issues that make me not do the best in these types of situations. She is much better with stress. I'll insist she ask questions if she has any. I'm sure biologics will not be an option unless other things don't work.

Who knows, maybe I'm all worried about nothing. I suppose all the pain and the bad blood tests could be a coincidence. But after a year of trying to ignore it I hope there is an answer.
 
Sorry you're going through this... pain and inflammation can be particularly difficult to pin down and resolve. And I personally believe pain and anxiety over it can become self-escalating. I have a family member who has been dealing with similar issues (foot, knee, hip mainly for her) the last few years and struggling to get answers. I think you're doing the right thing working through ortho and rheum... and if they aren't getting you there maybe neuro to follow. But dont discount your PCP, particularly if they have a preventive/wellness bent.

At some point in the process, if you feel you aren't making progress towards definitive diagnosis and treatment (and this isn't uncommon), you might also see if there is a good functional medicine practice in your area.

Modern medicine and physicians are exceptional when there are scientifically-proven/evidence-based causes and treatments. But pain and inflammation can have many causes, including diet, that aren't as well studied and that dont have conclusive evidence to support definitive diagnoses or treatments. Some PCPs are really good in this realm, but many are not and, frankly, our insurance/reimbursement mechanisms aren't designed to promote working outside increasingly formal evidence-based guidelines. In other words, your physicians may have their hands tied by their own training and philosophy or by their specialty or by legal liability risk or by the system as a whole from investigating beyond "accepted medical practice".

Functional medicine is less regulated and rarely paid for by insurance/government payors, and so free to cast a wider net in testing. Some (including me) look at their work with a very wary eye because there simply isn't as much research to support it... but, there is no doubt in my mind that there are both causal factors and treatment plans for many conditions that exist outside of evidence-based, accepted practice.

For my family member, identifying some lower level gluten and dairy intolerances as well as some borderline blood sugar and thyroid levels that aren't enough to trigger medical intervention have led to some targeted diet modifications. Pain hasn't been eliminated, but is has significantly reduced and is trending in the right direction. We're still working with a neurologist to consider nerve damage or other issues - but the more holistic approach is at least offering some improvement and maybe just as importantly, a feeling of having some control/input.

I'm not clinical - but retired from a long career in healthcare administration. I'm biased towards traditional medicine, but I've also seen enough to know it doesn't always have the right answers for every individual. I'm biased against some of the non-traditional practices, but recognize that many have benefited from non-tradional approaches. It may be worth some cautious exploration.

Good luck.
 
Tim,

I am sorry to hear about the rheumatoid arthritis diagnosis that may plague you for the rest of your life.

I think that Henry also gave you some great advice, in addition to what has been given. I would consider doing allergy tests (especially food-wise) to see if there is something that contributes to your inflammation woes.

I have had several drs over the years that practice a combo of western and eastern medicine. I have had to pay out of my own pocket but have benefited from the combo of medicinal practices. Maybe there is a practitioner near you that works with both modalities.

It might be as simple as figuring out your diet to take control of your inflammation though. I would probably start with an allergist as well as nutritionist to see how that affects you.....and take your sister with you to those dr appts too if she can.

Having someone with you or in your corner, if they can't always be with you, is invaluable. Allow her to be able to call your dr to ask questions if she can't be with you (and allow your dr to be able to answer her questions if that is acceptable to you). I know personally that having someone to know what to ask or how to ask something has made my life easier dr wise.

One thing to consider about western medicine is that just because a dr says that whatever levels of whatever they are looking at in your bloodwork are considered "normal".....they may not be normal for your body chemistry. So, if you are still feeling bad even after results say "normal", do not be afraid to explore that the results may be too low or too high for your body. It will take a lot of badgering on your part or your sisters part on your behalf. But do not be afraid to call BS on a dr if they start saying that your bloodwork is normal and you still feel like shit or are not responding the way drs think you ought to be to a therapy. For some of us, our normal is always low or always high for things that are considered normal for most other people. So keep that in mind as a possibility. Things like that can be backed up by previous bloodwork (if you have it) from a time when you felt perfectly normal. But it can be an uphill battle to find a dr that doesn't just read your numbers and go off that info.

Wish I could offer more help....
 
Tim, I'm not sure where in the country you are, but whenever I hear that someone who spends a lot of time outside has aches and pains like you describe in the Northeast I always question tick related stuff. Lyme and other tick diseases aren't looked at often enough, and are nothing to fool around with. If yo haven't been checked, please do.
 
I second having your Dr Run tick titers on you. Lyme disease / RMSF and other diseases are more prevalent than one would think..
Always start looking first for things that COULD be causing an immune response .

Tick borne diseases would be the most ideal scenario (practical and relatively easy treatment though long term treatment often required)

Unfortunately need to be looking for neoplastic markers as well as there was a recent article published where an individual randomly had RA develop and incidentally started having thyroid problems … her Dr missed it but her and neighbor was some specialist started talking and turned out was some weird thyroid cancer the neighbor knew about .

If it really is allergenic then swapping to a ketogenic diet often helps. Search through the huberman podcasts
 
Tim:

Sorry to hear that you may be dealing with Rheumatoid Arthritis. I was diagnosed with RA back in 1994 and have lived with it for the past 31 years. Back when I was diagnosed, the biologic drugs used to suppress a person's immune system, which causes the inflammation, were in the developmental process. Two of the first, Enbrel and Remicade were introduced in 1998. I went on Enbrel in 2004, after 10 years of failing on every traditional RA treatment known at the time.

The pain and discomfort you describe is familiar to me. After about 4 months on Enbrel, my pain, stiffness and joint discomfort was remarkably reduced. For the past 21 years, I have managed my RA with Enbrel, two injections a week, and an anti-inflammatory drug called Meloxicam. I inject the Enbrel myself. The Meloxicam, a pill, I only take as needed, which isn’t very often.

Ask the rheumatologist about the immune-suppressant drugs that are available today since Enbrel and Remicade are oldies.

The Arthritis foundation provides a “Supplement and Herb Guide for Arthritis Symptoms.” This guide provides research of the most popular supplements that may help treat RA symptoms. I have taken an Omega 3 medicine, Vascepa, for years. Lots of info around on the anti-inflammatory properties of Omega 3. My rheumatologist is not a big fan of natural meds, so I asked my primary care doctor to write me a prescription for it. I feel it has helped me, but I also believe that nothing can substitute doctor -prescribed medications when it comes to RA.

The advice you've already received on diet and fitness is very useful. I eat as few foods as I can that contribute to inflammation.

I hope you find a good rheumatologist and treatment plan that will give you lasting relief.

Dave
 
David Jack said:
Tim:

Sorry to hear that you may be dealing with Rheumatoid Arthritis. I was diagnosed with RA back in 1994 and have lived with it for the past 31 years. Back when I was diagnosed, the biologic drugs used to suppress a person's immune system, which causes the inflammation, were in the developmental process. Two of the first, Enbrel and Remicade were introduced in 1998. I went on Enbrel in 2004, after 10 years of failing on every traditional RA treatment known at the time.

The pain and discomfort you describe is familiar to me. After about 4 months on Enbrel, my pain, stiffness and joint discomfort was remarkably reduced. For the past 21 years, I have managed my RA with Enbrel, two injections a week, and an anti-inflammatory drug called Meloxicam. I inject the Enbrel myself. The Meloxicam, a pill, I only take as needed, which isn’t very often.

Ask the rheumatologist about the immune-suppressant drugs that are available today since Enbrel and Remicade are oldies.

The Arthritis foundation provides a “Supplement and Herb Guide for Arthritis Symptoms.” This guide provides research of the most popular supplements that may help treat RA symptoms. I have taken an Omega 3 medicine, Vascepa, for years. Lots of info around on the anti-inflammatory properties of Omega 3. My rheumatologist is not a big fan of natural meds, so I asked my primary care doctor to write me a prescription for it. I feel it has helped me, but I also believe that nothing can substitute doctor -prescribed medications when it comes to RA.

The advice you've already received on diet and fitness is very useful. I eat as few foods as I can that contribute to inflammation.

I hope you find a good rheumatologist and treatment plan that will give you lasting relief.

Dave
Click to expand...
Everything Dave said and avoid alcohol. Richard
 
TimJ said:
When things aren't going so well what better people to seek advice from but a bunch of duck hunters. ;)
Well, my good health I was so proud of has been shot down a little lately. That little bit of arthritis in my shoulders that bothered me occasionally started to keep me from sleeping. As I thought about it other things had been hurting me. I figured it was from working out, losing 30 lbs last year and getting in good shape for a 55 year old. The Orthopedists thought differently and added everything up together. A few blood tests later he said he can't do anything for me and I have an appointment with a rheumatologist next week. I know blood tests aren't 100% for rheumatoid arthritis but it doesn't look like there are many other options it could be.

I've watched some helpful videos about taking notes in with me. I've written down several pages of pains and weird things that didn't mean anything to me a year ago but now seem obvious after seeing what early symptoms are. I might have my sister come in with me as this is a bit daunting to me and I might need someone to listen carefully. I'm not too proud to say this scares me some.

Any advice on what to talk to the doc about, meds, diet, exercise or whatever? I hadn't needed a doctor for decades, maybe I should have gone a year earlier, could have saved a lot of pain.
Listen to those aching joints, they aren't always just wear and tear.

Tim
Click to expand...

Sorry to hear it buddy, sucks.

I'll have to second or third the tick borne disease tests, but I have to think that they checked that given that you are pretty close to where Lyme is endemic. I've had Lyme a couple times and 2 summers ago Jen ended up in the ICU in Wyoming with a mystery illness that I bet was Lyme. They had admitted her and decided there was no reason to put her on antibiotics because nothing indicated it, but the night shift put her on IV antibiotics and she perked up immediately. Coming back to CT and visiting with her normal docs, they tested for Lyme and it showed a recent infection. Crazy part of that story (other then her going to a walk in clinic and ending up in the ICU) was that our Fidelity financial advisor in CT is the identical twin brother to the ICU doc in WY.
 
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Another vote to check for Lyme, babesiosis, erlichiosis and several others. I've had Lyme too many times to count, as my job and of course hobbies, have me in the woods almost every day. One especially memorable case happened in November/December 2020, getting into the Dr was quite difficult as they of course thought I had Covid. Only the fact that I had a constant history of Lyme got me in. I took photos of what got drained from my left knee, day one and two, just for cred. :cool: Six and a half big ass syringes day one, one and a half day two. Hurt like hell, but the relief to bend my knee again was great. Three bites this spring so far, but got them off in less than 12 hours so probably in the clear. Another fun fact, the town I live in abuts the town of Lyme.

Back in the late 70's my mother had one of the early cases, which progressed to all the worst stuff. Facial palsy, arthritis, heart problems and more. The local DR thought it was just a summer flu or something, although she had the bullseye rash which is universally recognized today. She had both knees replaced, but over several years with high doses of IV antibiotics the other symptoms subsided.

A couple suggestions if you have them check for Lyme. The standard titer will pretty much always be positive if you ever had Lyme in the past. There is a second confirmatory test that indicates a current or recent infection, ask for that. If there is even the slightest doubt, demand a full antibiotic regimen. Don't take no for an answer. Also, among my employees there have been confirmed cases of the other nasty stuff, but so far I have been spared that pleasure. They all got treated and are generally ok long term.

Best of luck to you, hope you get the answers you need to feel better.
 
SJ Fairbank said:
A couple suggestions if you have them check for Lyme. The standard titer will pretty much always be positive if you ever had Lyme in the past. There is a second confirmatory test that indicates a current or recent infection, ask for that.
Click to expand...

Yes, for Lyme it ask for the Western Blot, that indicates current and previous infection.
 
Thanks everyone. I'll try to answer some of the stuff all in one. My thumbs are a little stiff this morning.

I'm in an area that Lyme isn't even thought of. I still might ask about it at my next check up just to be sure. We have none here and I do not travel to where it's at. I haven't traveled much for a while because of some other issues.
One of the tests was rather obvious that it was going to be autoimmune.

It was officially confirmed yesterday. The Dr was very good. She explained most of things on my list before I needed to ask. My josh I didn't think I'm that old but when did all doctors start to look like teenagers?

I have been checking out diet and supplements. I'm a little bit of a health nut when it comes to my food. If I eat fast food more than 2 times a month I'd be surprised. I cook most things from scratch or at least use very basic pre-made ingredients. I cut out bread and most pasta a couple years ago. I'm 5'9" and weight about 140lbs. I walk, ride bike and until the last couple months worked out regularly. Got too painful for that recently.
I'll try cutting some things out but there isn't a lot. If it's tomatoes and peppers I'll just live with the pain.😉 I also hope my 1 or 2 drinks a week don't have to go. I've never been a heavy drinker but I like a beer when I grill or a mixed drink on a Saturday evening.

I'm hoping the first treatment we are trying will work. It will take a while to know. I have another round of prednisone in the waiting because I can feel the pain coming back. I know someone who has had great luck with a biologic but I hope not to have to go that far. I think I'd have to try a couple others before we get to them.

I did get some baseline x-rays done and thankfully they didn't show any damage yet, so it looks like it was caught early.

It is so weird feeling the pain coming back. I didn't realize how much I hurt until I didn't have that pain for a while. I'm shocked I wasn't more of an ass to people than what I was. Only lost one friend because of it, but that one hurts a lot. Maybe I'll go write her another apology now.

Thanks everyone.
Tim
 
Good to hear you had a good visit. One thing I've learned is that you have to advocate for yourself and that can play out in many ways.


Don't you have family that you visit in Mn? I thought I remembered that.
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