Immunologist Down, Rheumatologist Next?

[Zap]

In the massive process of turning stones over, I've now seen an Immunologist. She ran a bunch of tests (9 vials of blood) and checked my prior test records. Everything looks normal, but I have not yet had Rheumatology work at this point, and there has to be some underlying answer for my myriad of inflammatory symptoms.

It is just frustrating to sit here feeling like crap and keep getting told by all the specialists that everything is normal. And the only time anything has been off - there is no proposed treatment. That would be fine if it wasn't a life-altering problem.

I can't stop thinking about the week where I took the course of Dexamethasone (1 mg AM, 1 mg PM) and I felt like myself again. I was doing car work, waking up at a normal time, feeling rested, not aching, not dripping with sweat and not having migraines. It was like a miracle. Not sure if it would have lasted or not, but it would have been worth a try I think.

At this point I'd like to find a doctor who will treat the issues instead of having to focus on tests, which cost a fortune, don't find anything, and serve as an excuse to do nothing, even though I am most definitely not okay.

I'm somewhat curious how many dysautonomia patients end up having rheumatoid related issues that cause and/or exacerbate their symptoms. Since I haven't looked here yet, I figure it is worth a try. I won't get my hopes up too much - they've had more than enough opportunities to become disillusioned.

[sue1234]

You probably mentioned this before, but have you seen an endocrinologist so they could investigate the cortisol aspect? About 12 years ago, prePOTS but low energy, a holistic MD put me on a very low dose of Cortef and I felt like my old self from many years earlier. One day I felt soooo good, I hopped in my car and drove to town and shopped. I had previously given up driving! After a few months I began weaning off of it because I was afraid I didn't really need it. Never felt like that again.

(Sorry if I told this story to you before...I can't keep everyone straight here on their story!)

[Relax86]

I also found relief with Hydrocortisone. I credit the drug for my recovery. I have since weaned as most of my Doc's swear it's doing more harm than good. But when your BP is in the toilet, HR is radical, pee all of your water, need water to stand, can't keep body temp, can't shower, can't stand noise or smells, can't tolerate eating....yeah, I'll just take the risk of a low dose HC. I did have a supposed negative cotrosyn test from a Doc that said i was crazy. Found a second endo that did a 2nd work up and also confirmed I had normal endo testing. She's did find positive ANA and referred me to her friend who is rheumatologist. Appt is Dec 21. Zap, it looks like we are on the same path, or close to it. Good luck

[ukwildcat]

I have always had joint pain. I saw a rheumatologist in 2005 and got a positive (but a low positive) on rheuatology blood work. However, this past year, my joint pain has become more intense(some days unbearable). it has also become another problem that is keeping me from preforming every day activities, on top of my many other pots symptoms. Recently, told I also have hypermobility in my joints and I was given gabapentin but that has not helped my pain at all. Today they sent me again to get the rheumatology blood test done again(like i have money to throw away). I dont understand why they do these tests again and again. If it turns out different, which test do you believe. I get to point that I cry because mixed emotions, dont want tests to be positive that something wrong but want them to figure out what it wrong, so we can work to treat it. If this test is negative, there still is a problem that I have to deal with and need treatment for. It seems like Im pulling teeth trying to get help with this problem. I think this is a problem that doctors dont want to deal with because of so many problems with pain meds and side effects of other medications for pain management. dont mean to rant, just frustrated. let us know how your test turns out and treatment you receive.

[abbyw]

Can I ask why both of you stopped the treatments that made you feel so much better?

[sue1234]

To be honest, for me, I was trying to find a solution to my lack of energy through a more holistic treatment. In my mind, even though the cortef made me feel wonderful, I couldn't reconcile how I felt regarding holistic medicine vs. conventional medicine. It wasn't like I was taking a vitamin or mineral, and that made all the difference in the world. I felt like taking something as powerful as cortef, in the long run, should be absolute necessary. I felt like conventional med. would have found out I needed it IF I really needed it, whereas holistic was more like let's try it and see how you feel.

A few years later I did have dynamic testing of cortisol action by a conventional doctor, and it showed my adrenals work fine. But on the other hand, anytime I do holistic cortisol testing, it shows I am "low" at some points during the day. I am sitting on the fence here indefinitely.

[diamondcut]

Zap if you know in yourself that Dexamethasone helped you cant you persuede one of your Drs to let you trial it, surely in terms of cost it would be far less to trial that then have more blood tests, do the dr's not believe you when you say what an improvement you felt? It seems terrible that there is a drug you know you feel better on yet cant get acess to it.

[LMG]

There is a book called Safe Uses of Cortisol, by William Jeffries. Some of the alternative/integrative/holistic practitioners will use low dose cortef ( or try hormones like thyroid, dhea etc) when a patient presents with the kind of fatigue and myriad of other symptoms we have. I have a nurse practitioner lined up to see as I have heard she will use cortef and thyroid routinely.

Also Dr. Teitelbaum , who treats CFS/ Fibro etc seems to use it...if you google him, you will find references to it.

Great that you felt so good on it! Sounds like it's worth pursuing.

I was on it for 5 days last month and did feel a lot better the last two. Went right back to baseline when I stopped.

[Zap]

Well, I didn't expect that much feedback so soon!

Sue - I've seen an endo and cortisol was tested (salivary samples and blood draw), but it came back normal. I was surprised, as at the time I felt like that could easily explain what was going on with me. It sounds like your response to Cortef is very similar to how I felt on the Dexamethasone.

Relax - Sounds like the steroids may even help re-balance something, at which point they aren't as necessary. Now that's a solution that sounds even more appealing. I don't think I've had ANA tested yet, but it is on my to-do list of Rheumy tests. It does sound like we're running in tandem. Good luck at your appointment!

ukwildcat - I know how you feel. I think that the doctors making the interpretation are as important, or more-so, than the tests themselves. Many are looking for negatives to reassure patients and tell them they are fine, but what if you really aren't OK? That's the situation that most of us are stuck in. We really just need TREATMENT - even in spite of the tests. The statistics don't lie, and it is looking like a lot of us are helped by glucocorticoids, so why not come to the realization that giving someone their life back is no different for POTS than say for Lupus, where they use low dose steroids as a treatment. We just don't have a POTS-factor test yet, but it isn't rocket science!

Sue - It is frustrating to sit on the fence - like you, I greatly prefer natural methods whenever possible BUT I have come to realize that the lesser of two evils may eventually be something that gives me my life back. I'd rather have a full life, with some risks than to have a greatly reduced life with none. Besides, following natural protocols on top of any medications has a great likelihood to help the body cope with them. There are so many people that do nothing for their health, take a bunch of meds, and seem to come out fine - so if we actually try a bit to support the body, I would believe that can help reduce risks. It is interesting that the holistic testing seems to indicate one thing consistently and that you've had positive results from following it.

Diamond - That is the terrible issue that I'm chasing. I've had others ask me the same question - why won't someone just let me use it, if it changes my life! Who knows if it will be another two week miracle and a moot point, but it did more than any other drug ever has. If they let Lupus patients use it over the long term, and it is fairly safe, then what is the harm in trying? I could maybe even go back to work! Money doesn't grow on trees, as sure as the disability company hires quacks to deny legit claims. I'm to the point where I don't see why we can't use it, since nothing else will work. Doctors today seem content to use negatives to push patients out the door, rather than treat them. For shame!

LMG - Thanks for the information! From looking, I would say that the 2 mg is a low dose if 0.75 mg is the starting dose (the one reference I checked said up to 9 mg/day - but didn't say it was for long term use either). Sounds like you are yet another that has had at least some help from the treatment. It makes me quite curious - I should run a poll!

[Relax86]

I reluctantly and very carefully weaned from hydrocortisone b/c some Doc's believe that you can shut down your adrenals...as your body will not make it's own as I use the supplement. Another of my Doc's felt that low dose was not harmful and it was allowing my adrenals to rest from being fatigued (this drove my first endo absolutely nuts). So in my quest to avoid giving myself Addisons disease I weaned when I felt like a had a chance at not having my body crash right back into a POTS flare. I had weaned in April only to find myself severely POTsy again in May. Now that I'm off of it I feel happy to be med-free and that my body was in fact ready. If I ever have another flare I would jump back on it in a heart beat. Only people with POTs know how unbelievably sh*tty it is - and I refuse to suffer since I have found something that helps support my recovery. I just wish I knew my cause...hopefully my next appt will help me put together the pieces.