Rheumatologist visit 03/07/14

General Blog
1

I'm struggling with whether or not I have the right rheumy. On the one hand, he is treating my disease very aggressively and I appreciate that. One fear I would have is that a doctor would minimize my symptoms and wait to treat them, and therefore, wait longer for remission from potential damage.

However, I am confused by the fact that the ONLY treatment he thinks is necessary is biologics.

- He won't let me take methotrexate because my liver functions rose with it.

- He won't let me take NSAIDs because I have high blood pressure that has been difficult to control.

- He gave me tramadol for pain, and Humira, and that's it.

I just went in for a follow-up and he decided that I have not had enough response to Humira after barely 3 months... so now switching to Enbrel (fingers crossed).

Otherwise, he wouldn't be doing anything else, but I started a conversation with him asking about other treatment modalities such as physical therapy. I wondered why I have not had x-rays of any joints except my hands. He says that he already believes I have damage in several joints, so there is no point in x-rays. He also says that the only other things to do that we are not doing is that when I feel bad enough, I can ask for injections in my painful joints, and when the injections do not work any longer, and the medications have all failed, only at that point, should we consider surgery.

I had to ask 3 different ways at that visit, and finally, he gave me a slip for physical therapy (which is something I really wanted to try).

So, now the treatment plan is to continue any medications he tries me on, and do PT. If PT isn't cutting it, then move to injections, and when injections and all drugs have been tried then move to surgery. At least it is a plan!

2

It sounds like a good plan to me, Shelly. Your rheumatologist seems to have you on medications with a good track record of preventing damage, and besides that, he’s concerned about liver problems and making your high blood pressure worse. I can see your concern about not having x-rays to monitor damage, but he has already got you on the most aggressive and effective treatment, so there really is little purpose to x-rays at this point.

Physical therapy will make your muscles stronger, to support your joints better. That’s always a good thing. But it isn’t a substitute for the medical treatment your rheumie is giving you.

As far as combining a DMARD with your bio is concerned, as a group they don’t have a great track record of preventing damage. Yes, they work for some. Others get symptom relief without damage prevention. Sulfasalazine and hydroxychloroquine are lightweight choices. Methotrexate is more effective, but very hard on the liver (as you found out), and leflunomide is even worse (which is why he isn’t going there with you). And that’s about it, as far a medication choices are concerned. Until you start working your way through the biologics, which you are doing.

For someone with suspected damage, it sounds as if you and your rheumie are very much on the right track.

3

That's reassuring anyway Seenie. I am not looking to stop the Biologics or any treatment he prescribes, it just seems very one-dimensional. I will feel better knowing that we have explored other options such as PT in addition to the drugs.

4

Shelly, have you had a look at the book that I recommend in Book Reviews (above)?

5

Yes, Seenie, I have read the book. I believe I understand the process of PsA. I struggle with just trusting that every joint problem I have can be traced back to PsA, without actually investigating the joint. What if I have a torn ligament somewhere or some other cause of joint pain, how will we ever know? What if it is something repairable that will only get worse because it was not repaired?

6

I think I get what you are saying. When you go for PT, those questions sound like great conversation starters for with your therapist!

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It sounds to me like your rheumy is very much on track with medications. I'm not sure why you are questioning this plan? It seems clear that the DMARD's and NSAID's are not a great fit for you with liver problems and high BP. A biologic and pain control seems totally appropriate.

My rheumy rarely does x-rays (every couple of years maybe, in really active disease areas). A rheumatologists only job is to try and get the disease under control with medication, and make sure the medication isn't doing you too much damage.

If you want other things, like PT, you can ask for a referral, or see your primary to get a referral.

BTW, you've got a REALL LONG TIME before you run through all the medications. I've had PsA 35 years, and still have one more medication to try, despite changing repeatedly over the past 10 years. Plus, the individual joint injections won't happen that often, they are really only indicated for one or two extra-active joints or soft tissue while the rest of you is doing well. If all of you is doing poorly, it's time for a medication change.

I know you are nervous about the whole thing, but I think your doc is doing well, and at least he isn't one of those who wants you to suffer for 6 months before declaring that a med isn't working! :)

8

Thanks Marietta. I appreciate the reassurances.

9

Hi, I am a new member today. Methotrexate was a miracle for me. However, my liver function tests went up a bit above normal and continued to slowly rise above normal levels. My rheumatologist referred me to a liver specialist at Virginia Mason Medical Center in Seattle. He and his associates are on the forefront of liver research. After a liver biopsy, he said I could stay on it and be monitored by blood tests. When I returned to him for a follow up appointment, he said that he sympathized with my desire to take methotrexate for the excellent results I got with it. However, he would recommend not taking it. If I insisted, he would follow my liver with a liver biopsy every few months! Then he told me that as my liver enzymes continued to gradually rise, I could be on the transplant list in a few years for liver failure! I really wanted to stay in remission and take the methotrexate, but after considering all he said, I went off it. My rheumatologist said there is another DMARD that can be taken that will still raise your liver enzymes and you might eventually get cirrhosis, but it won't kill you. So, I am done with DMARDs. I am on my fourth biologic now and hoping this will be the one that works. Best wishes for everyone's health!