Frustration!

[beckywebb04]

Went to see my specialist today, have to say have come away even more confused than ever. I currently take hydroxychloroquine which doesn't have any effect on my pain so was put on a tapered course of prednisolone for a month which also had no effect and finished last week. My CRP levels are still elevated, and I'm still having pain in my joints that is progressively worsening. Now, the doctor had told me at my last appointment that he would think about putting me on methotrexate but at today's appointment he said that as the pred didn't work it was unlikely that the mtx would either. The issue I have now is that he's decided to leave me on hydroxychloroquine even though it's having no effect and have me manage any pain with co-codamol until my next appointment which he has made for October. That's four more months I have to deal with this.

Would any of you accept this treatment or am I right in thinking I should ask my GP to refer me elsewhere for a second opinion? My issue is that this doctor doesn't seem to have a clue how to treat me and I'm getting less able to do things with every day that passes. He even admitted he's flummoxed by me!

[Azabat]

Erm, forgive my bluntness, but that's utter bullshit. I would definitely be asking for a second opinion. Mtx and prednisone work in completely different ways, and don't understand his reasoning at all. May I come slap your doctor for you? How can he be flummoxed when he hasn't tried mtx yet?? Perhaps he's just flummoxed by nature In any case, yes, talk to your gp, and I don't think it's necessary to wait till October to do so. *grumblemutter*

-Bats

[Azabat in reply to Azabat]

It strikes me that I was excessively grumpy when I posted last night, my apologies.

This morning I still think that October is a silly amount of time to wait, but seeing another specialist can take six months or more here (though I don't know what it's like for you). When my first run of prednisone didn't help, my rheumy upped the dose and had me try again. I still want to slap the doctor, don't get me wrong, but when I'm not getting the help I need, I've found pestering to be more useful. I don't always get to see the doctor, but I do get new instructions. Someone else talked about this being a 'self-service' kind of disease, and I've found that a certain amount of self-advocacy is necessary (even in the short time since I've been diagnosed). At very least a higher dose might help while you wait for the appointment. xx

-Bats

[Hidden in reply to Azabat]

As far as I can tell Bats, wanting to slap the doctor is a side effect of being on Pred. But could also apply to any of the drugs we have to take. xx

[helixhelix]

I'm not quite in Bat's "that's bullshit" team, although I do agree with her conclusion that you should ask for a second opinion. It's unacceptable to leave you until October with no better diagnosis/treatment or explanation as to why.

I've heard of this reasoning before. In that prednisone is very effective way of tackling inflammation, and some rheumy's do use it to help diagnosis. The theory is that if Pred does make a big difference to pain levels and to blood readings then it does help demonstrate that what you have is an inflammatory condition of some sort. So in this case the docs will start trying you on the drugs to treat inflammatory arthritis even if you're seronegative or don't show classic physical symptoms like swollen joints. If it doesn't make any difference then there may be something else going on, and MTX isn't really something you give people on the off chance. But if that was his or her reasoning then that should have been explained to you!

Go find a new rheumy.....

[Hidden]

Diagnosis can take time .... there's very often a big element of 'wait & see'. And the 'steroid test' often seems to be a valid part of that.

However I agree that you should not be left stranded till October. And I think it is just as important, possibly more important, to explain uncertainty about diagnosis to a patient as it is to explain a definite diagnosis. So yep, I'm with the others, it might be worth asking for a second opinion on the grounds that you can't sit around for months, completely in the dark about what's wrong with you while taking a drug that doesn't seem to have made you feel better or reduced your inflammation levels.

It could take longer than 4 months to arrange a second opinion though. So it might be an idea to phone up, explain your predicament and ask for a more in-depth explanation and a re-think about treatment.

[cazpz]

Hi Becky, I was on exactly the same drugs but with Arcoxia which didn't really help either. I waited 3 months to see a specialist by which time I was in a wheelchair. He apologised for the wait and put me on Methotrexate immediately. I was then put on a monthly infusion of Toxilizumab which improved things no end.

Co-codamol is ok for a couple of weeks but can be addictive long-term. Try seeing your GP and voicing your concerns because I can't see why your specialist is flummoxed as your condition seems to be pretty straightforward and you need Methotrexate or similar to help you along. There is no reason why mtx shouldn't work if pred. didn't, as it certainly did for me. Stamp your feet a bit! All the best and hope it goes well.

[beckywebb04]

Just an update, I went to see my gp today who agreed to refer me elsewhere for a second opinion. This time I'm actually being sent to a rheumatology department at a hospital, rather than to the musculoskeletal specialist which is definitely a step forward I think. GP said it shouldn't take too long and is very hopeful I will be seen before October. He too seemed a bit confused as to why I hadn't been offered methotrexate. However, I'm definitely feeling more positive after today