Severe joint pain; stopped remicade; so sad

Happyday, Sending support your way too! Please keep us posted on what expert doc says & how you are doing.

Okay... I read through what HappyDay and Mrs. Brady have been saying. I don't think either of you were really asking me anything, but I do hope you both are hanging in there.

If you are not happy with most of your doctors, asking for recommendations is sometimes smart. It doesn't always work (based on my experience), but the GP doctor I have now is due to another unrelated physician recommending her. My father-in-law's cardiologist, who is a very kind/empathetic/good-listener doctor, recommended her to him. Once he met her he was blown away at how well she listened, and he told me I should go see her.

From what I can tell there just isn't a good linear path to follow once we start getting into mystery pains/problems if the regular doctors dismiss us. Persistence is key here... I really can't recommend anything else but that. If you keep persistence you will eventually find the right help I believe.

Burli, in regard to your skin cancers, those are most likely attributable to the Imuran. It has a known, strong association with development of skin cancer and users are advised to avoid sun exposure as much as possible and to use sun screen liberally when they can't avoid exposure.

Hey T,
Thanks for your reports. I still wish you could see a really good neurologist. Their needles are attached to a machine that takes precise measurements of nerve conduction & muscle contraction. It hurts but it's worth it to get the data on what's what with your nerves & muscles.
Lyrica may indeed give you some relief. I'd trade weight gain for pain elimination. The former is uncomfortable while the latter has been truly debilitating, right?
As you said, persistence!

It would be a simple matter to ask your Rheumy how he weighed the risk/benefit of Remicade.

If he/she thinks you did not have DILE, it is not really the GI you should be changing.

My impression is that most GIs don't know about the range of remicade's adverse effects, including anti-TNF induced lupus. It's the rheumatologists that stay current who are in the know.
If I had DILE, no way would I go near any of the anti-TNFs....

Happy to help. I spent weeks/months reading articles published in medical journals. If you want to do your own search, the best on this topic are in rheumatology, that document cases back over more than a decade and do meta-analyses of adverse effects. I cited some findings above earlier in this thread. Big red flags if you, like me, have a history of these vulnerabilities / sensitivities.
It's such a small % of the overall population treated with these drugs, so many doctors (esp the GIs) just aren't aware. Remicade is so good for so many, which is why it has become the go-to, hard-hitting UC drug. I wish I were able to tolerate it, as I'd still be on it, in fact.
I've found communication between my GI and rheumatologist to be essential in exploring a path forward for treating my UC. (Still TBD...) You could also consult an allergist or an immunology specialist. We need to be our own advocates and keep detailed records.

Contentprof said...
Hey T,
Thanks for your reports. I still wish you could see a really good neurologist. Their needles are attached to a machine that takes precise measurements of nerve conduction & muscle contraction. It hurts but it's worth it to get the data on what's what with your nerves & muscles.
Lyrica may indeed give you some relief. I'd trade weight gain for pain elimination. The former is uncomfortable while the latter has been truly debilitating, right?
As you said, persistence!

I will mention this to my GP as we go forward here in the next two weeks. She wanted me to see a better neurologist as well, but choosing the right one is key. I don't give a da** if it hurts if we get to the bottom of this. I already hurt like hell anyways, lol.

The pain doctor had a med student come take questions first, and she asked questions related to depression/anxiety. They deal with that a good amount because of the toll debilitating pain can take on a person. I think I'm okay, but it was really good to have sympathetic and understanding ears. I'm seeing my counselor monthly right now as I work over everything in my life. He thinks I'm doing really well.

I suppose regarding the weight gain vs pain, it just matters how much. I'm only up about 10-12 pounds right now, but I look fat compared to my usual slender self. It's a bit hard on my self consciousness, but my wife has seemed supportive. After a couple weeks of balancing out cortisol production I hope I can get myself lowered down some before Lyrica swings me back potentially in that direction.

My wife and I have our home up for sale presently. That has been an extra uncertainty and bit of a stressor. I built the place for myself, so it's a bit sad going through this too... but we're aiming to live simply in an apartment closer to our work/careers until we at least get ourselves straightened out health-wise. It's sad to leave the house, but she wants a house we can call "ours" rather than "mine" that she moved into last year when we got married. Taking a couple years to live focusing 100% on health and work sounds good compared to all the responsibilities I've had lately.

In a lot of pain tonight. Thanks for listening.

Mrs Brady I hear you loud and clear. After all I have been through with my GI group, she now informed me through her nurse via telephone that she wants me to go on simponi as soon as we can get authorization. No real discussion of the side effects or pros and cons of different alternatives (except for a brief discussion as I awakened from the scope in the recovery room). Didn't ask me if I would be willing to take it, just made the decision. And DILE is one of the most prominently listed side effects. But since prednisone is having little effect, what choice do I have? Those emotions are clouding my judgment too!

Well, my appointment at the other hospital with the other expert is Tues. I may get the same answer-- who knows. I just hope he is a little more open and honest and compassionate. If surgery is inevitable, then I would like to get it over with and avoid any further misery like I have suffered through over the past 2 years on a treatment that made very little difference in the long run.

As for consultation between the GI and the other docs-- I really got the impression that she thought they were invading on her territory and did not appreciate their input at all (even though in one case she specifically asked for it and in the other she referred me).

ContentProf, it is great that you are able to keep such a positive and non emotional attitude, as it does help me, and possibly some others of us keep it a little more together.

The detailed journal has been very very helpful to me as I am preparing to meet with this new doc on Tues. I kept detailed notes from June 2011 through January 2014 and then sporadically since then.

Hi Thoreau- So sorry to hear pain meds aren't working. They aren't a long term solution in any case.

Essential tests would be EMG & nerve conduction study. Also MRI of head, neck, and spine. Your doctor would have to make strong case for insurance to cover them. This is what I'd do now if I were in your situation -- I'm 100% confident this is what I would advocate for. (I had some of these to determine what was wrong for me.)

Lab tests for you so far have not been sufficient for differential diagnosis. To the extent they have tested your blood here and there, they have not have picked up what other auto-immune processes may be going on, especially (most likely) demyelination or other conditions that could've been underlying and kicked off by the anti-TNF, or caused by the anti-TNF. They can do more lab work, & they probably would at Mayo (lots of auto immune anti-body tests), but those tests aren't definitive. These tests (MRIs, EMG & nerve conduction I noted above) would give a clearer comprehensive picture (literally!) alongside your detailed record of years of clinical symptoms.

The list of possible conditions is long but essential to rule out, because they can be disabling if left untreated. You are just trying to deal with pain, which doesn't address causes of pain. The good news is there are many drugs now to intervene if you have one of these, but you need to know what actually needs treatment. Examples: multiple sclerosis, Gillain-barre syndrome, or other neurological disorders, degenerative myelopathy & related disorders -- and as you may recall, lupus can take many years to diagnose and manifests differently from one person to the next. There are too many possibilities to list, and you may scare yourself if you read about all of them. In the hands of the right specialists, you'd be well served because they know how to test to rule out some and narrow in on others. Also, you should tell them that a high dose of Pred actually helped a bit, so it could be something inflammatory. (That is, inflammation is not ruled out because 40 mg of Pred is low compared to hitting hard with a steroid by IV if you were hospitalized briefly.)

The case needs to be made that you warrant the more comprehensive testing for differential diagnosis. You are way too young to have had these severe pains and to be suffering for so long. Wish I were there to advocate for you. I'm with you in spirit! I hope it helps to know that.

In the meantime, whatever you can do to reduce stress right now would be good. (Sounds like moving will add stress.... given what you've said... Just thinking out loud...)

Happyday - Checking in to see how your appointment with the "expert" went. Hoping and praying that you had a good discussion/appointment with some other options that haven't been recommended before. Please remember, you have the ultimate decision in deciding your treatment plan.

Happyday - I am so happy to hear that you have found a compassionate and well educated GI! Thanks for sharing what you learned from your discussion, great information. I am so glad you found him and had your appointment before starting the Simponi. Please keep me posted as you and your and GI come up with a treatment plan. It truly is a Happy Day!

Hey T - I've been keeping an eye out for your update on tests & results.

Based on recent reading, I'm thinking you could have some connective tissue disorder as well as other possible auto immune problems triggered by remicade. Very eager to hear you get a definitive diagnosis, so treatment can be targeted rather than a shot in the dark.

I almost began a flare but nipped it in the bud with nightly cortenemas (at least It appears it's working), and went on liquid diet (broth, etc) for a few days. Not ready to jump to Entyvio given my Remicade experience. And definitely not another anti-TNF. So in a holding pattern.

Keep us posted. I'll be standing by waiting to hear what you Learn.