Having trouble with my Rheum Dr

Hello, I have both PSA and RA have been on I think about 4 or 5 meds since being diagnosed. I have had several allergic reactions to them. The only one that I didn't have a reaction was Enbrel, that stopped working. I have been on Humira for three months. Doing okay. About two weeks ago I wake up with a pain in my neck thinking it's the arthritis I take a hot shower. The pain gets worse and I can't move my body because of the pain. I call both docs they are out until the first of the year. My general suggests I go to emergency room. I go have test done and nothing to why I am having this pain. I find that my liver is elevated so is my blood pressure. I know the liver was a little high. The ER docs told me to stop taking the Humira not the important ones like thyroid etc.

Visiting with my Rhuemie I felt and always have felt that he really doesn't listen to me and disregards what I say. I have talked with my GP about how I feel, he just says give him time arthritis is a hard to diagnose everyone is different. So I have given him time. Yesterday was the usual day he said he read the er report then said he knew I had high liver counts. To keep taking the Humira also said that I have been going there for two years and we have gone through several meds and with my liver we don't have very many options. I tried to tell him my GP wants to do pain management to see if my blood pressure goes down. All he said was get a hold of my doctor, get a referral to see a liver specialist.

Not only did I feel like a hypochondriac I felt like I was wasting his time. O and my blood pressure went down in his office. 118/80 Two days before it was a little high 142/ 82 at my GP office. Go figure.

I was diagnosed with PSA March of 2014 and in July of 2014 RA. I was a very busy single mother of two out of four before the diagnosis. After getting injured at work I never came back to what I call my old normal. If it wasn't for my legs giving out not being able to walk for almost two months I think I would still be the marathon mom. So I have my new normal and I am living with pain that I try to hide from my children and the the world.

I don't know if I should email my GP explain again how I feel and if he can refer me to another Rheumie.

Hi zaporah.

I'm due to have a liver scan to check out persistently raised ALT. My rheumy asked my GP to refer me for that too. I'm quite pleased about it, I think it's a sensible move because raised ALT isn't necessarily serious unless it causes damage and that's what the scan will clarify.

I think when we're on a biologic that is working pretty well then deciding whether or when a change is required is quite difficult. However I do think my rheumy would listen if I had severe pain. What kind of pain management does your GP have in mind? Are you basically saying that your rheumy won't give you anything for pain? There may be options other than painkillers and in any case I do think this is something to discuss further with your GP.

It sounds ike there's been a bit of a communication breakdown with your rheumy. It could be that his professional opinion is that you can't tolerate painkillers but hasn't really explained this enough to get you on board with his approach. Or it could be that he just isn't listening and therefore doesn't appreciate how much you're struggling.

What are your priorities? Pain relief? Or concern about liver levels and BP? Or all three? Perhaps have a think about what you'd like to happen and then go back to your GP who does sound like a better communicator and see if the 2 of you can come up with a plan.

And it's miserable having to hide how you're feeling from the world. But we get it so lean on us while you get this sorted.

I think my liver would be a good place to start because my levels keep going up. I haven't taken much for the pain and believe that is why my BP is high. I think discussing this with my general and then including my rheumy once I have a plan. Thank you for your help.

I'm going to have a scan, I think it's called a fibroscan (might be called something different in the states). It's a non-invasive procedure - no needles involved so I'm not at all apprehensive.

It's good that your GP is looking for ways to help with pain management. Will you let us know how things go?

zaporah said:

I think my liver would be a good place to start because my levels keep going up. I haven't taken much for the pain and believe that is why my BP is high. I think discussing this with my general and then including my rheumy once I have a plan. Thank you for your help.

Hi Zaporah,

I had something similar happen recently. I have PsA, RA and Crohn's (newly diagnosed on Crohn's). I was getting terrible neck pain followed by worsening headache and nausea (hands down the worst I've ever felt). I was having a delayed reaction to my Remicade infusion, the side effects would pop us a week later. In December, my liver enzymes were elevated for the first time ever. After I got the Crohn's diagnosis, my rheumy said that could explain the liver being off and she increased my dosage of Remicade, changed it from every 6 weeks to 4 weeks and added premedications for the Remicade. Maybe your doctor could give you something to keep you from reacting to your biologic? At any rate, now my liver is normal again and the pre-meds really helped keep me from reacting to the Remicade (benadryl, tylenol, solumedrol, phenergan and zofran).