Venting about my rheumy....

Starburst

I left a message for my rheumy saying I'm unhappy on my medication due to the side-effects. I brought it up in my last appt and he advised me to drop the dose, which I did but the side-effects are still causing problems. He phoned today and left a message saying to take a total break for a week, then go back on the lower dose and take it from there.

I'm unhappy with the situation. I've been on hydroxychloroquine for almost 6 months now and it's not even working that well. I'm on a low dose, (200mg) which worries me. I feel like we should be my illness aggressively, while I'm still young. I understand my rheumy doesn't want me to be on the heavy drugs because I am RF negative but I still have arthritis and I'm already experiencing small changes in my hands. I am concerned and unhappy.

Thanks for listening. I just needed to get things off my chest.

valval

princess01 wrote:

I left a message for my rheumy saying I'm unhappy on my medication due to the side-effects. I brought it up in my last appt and he advised me to drop the dose, which I did but the side-effects are still causing problems. He phoned today and left a message saying to take a total break for a week, then go back on the lower dose and take it from there.

I'm unhappy with the situation. I've been on hydroxychloroquine for almost 6 months now and it's not even working that well. I'm on a low dose, (200mg) which worries me. I feel like we should be my illness aggressively, while I'm still young. I understand my rheumy doesn't want me to be on the heavy drugs because I am RF negative but I still have arthritis and I'm already experiencing small changes in my hands. I am concerned and unhappy.

Thanks for listening. I just needed to get things off my chest.

hi sorry it giving you side affects works great for me with naproxen feel much more energy less stiffness and swelling gone down . so there r lots of other meds out there give it a go as they sugest and if does not work get back to them be polite but firm good luck

Starburst

I'm now off hydroxychloroquine to 'see what happens'. I imagine my arthritis won't improve but there we go!!!!

frogmorton

Hi Princess

What side effects are you having? I have been on hydroxy for ages and most of the time i think it does keep things under control.

The only probs I had were a bit of tummy upset. Solved it with lanzop 30mg (for something else but helped) and taking them in the middle of my meals.

Keeep a check on your condition - make notes daily things like stiffness and for how long - any raise in temp etc so you can agrue your case better when you get to see rheumy next.

Good luck

Toni xx

Starburst

It's making me very dizzy. :?

I phoned my rheumy again today (he must love me)! I had an osteopath appt because my back was bad and he used to treat me when I was younger, so I trust him. He was honest with me and said he couldn't do anything. He said I have inflammation of the rib cartilage and inflammation along the spine and that I need steroids and a better drug treatment. My rheumy said there's no magic cure and blamed it all on fibromyalgia but the osteopath examined my ribs and back (which my rheumy has not done since October) and said it's definitley inflammation. Rheumy said we already know I have an inflammatory disorder and that there's nothing else he can do but he'll "try to get me an appt before July"! :roll: I feel super irritated and still, suffering a lot.

I just need to vent or else I'll go mad!!!!!

caprica

That's awful!!!! Your rheumy sounds a bit useless.. How is your GP? Any chance of going to him/her and getting referred to someone else? If you can afford it, it might be an idea researching if there are any rheumatologists in your area that have both private and NHS practices. Pay for one consultation privately (about £150) and then ask to be transferred to their NHS list.

They could at least switch you to sulfasalazine or something.. there's plenty of other options!! Grrr. Sorry this is making me angry, I can't believe he's just leaving you suffering where there's so many options to be explored!

Starburst

caprica wrote:

That's awful!!!! Your rheumy sounds a bit useless.. How is your GP? Any chance of going to him/her and getting referred to someone else? If you can afford it, it might be an idea researching if there are any rheumatologists in your area that have both private and NHS practices. Pay for one consultation privately (about £150) and then ask to be transferred to their NHS list.

They could at least switch you to sulfasalazine or something.. there's plenty of other options!! Grrr. Sorry this is making me angry, I can't believe he's just leaving you suffering where there's so many options to be explored!

Thank you for the reply. I was worried it's just me being a pain and hoping for an immediate answer. I was actually seeing this rheum privately but my insurance doesn't cover long-term conditions, so he transferred me to his NHS clinic. If he doesn't get me an earlier appt, I'm going to try to get a private appt with him. I s'pose I could see someone else privately and I may look into it. Failing that, I'm going to ask my GP to refer me for a 2nd opinion on the NHS, if they agree! I think it may all get a bit confusing. I want to push my rheumy to treat me because he is a good doctor but he's not listening to me atm. :roll:

speedalong

This sounds a nightmare. I think you should keep a bullet point diary - side effects, how arther is etc - maybe he will "listen" better if it is presented written down in black and white. Have you asked for a cancellation? Would you GP give you the steriods your osteopath says you need in the interim.

It is so frustrating.

Speedalong