Rheumy follow up appt today.

[Cfmad298601]

Had my first appt back in Oct, and was sent away with a suitcase full of pred with instructions to taper down from 40 to 12.5mg. today had my follow up appt. I had recently managed to go down to 15mg but had a few wobble days (stiff neck, slight tenderness around eyes/side of face etc) so took an extra 2.5 when needed and this seemed to quickly improve things.

Todays ESR was 16 and CRP is 9, so definitely improved from last time.

Anyways after just a catch-up and chat etc, etc she has only given me enough pred to continue for next 14 days at 15mg/day saying I will need to see my gp ( she will notify the surgery). I should be put on a schedule of methotrexate (is that correct?) just googled it, and the list of possible side effects looks horrendous - surely no better than pred, or maybe I’m missing something!

Apart from feeling very anxious that I have to try and get something sorted within the next 2 weeks, and we all know how difficult it is to get a gp appt, does anyone have info or suggestions about what I should be doing or asking.

Just feel a bit out of my depth……….

[PMRpro Ambassador]

My personal opinion is you shouldn't be just sent away to start MTX - you should have blood tests done and counselling, AND you should be allowed to say no. The GP doesn't do it, it is a consultant-led drug but maybe the GP is able to prescribe it with the consultant's letter (not sure).

However, I think she's a bit optimistic you can have it set up in 2 weeks so someone will have to provide some emergency pred - and anyway, you don't just switch MTX for the pred, you continue with the pred, start the MTX and then after a month or two can start to reduce the pred dose slowly. MTX can take a few months to start to have an effect and t doesn't work for everyone so it may not let you taper any faster.

You do need to get an urgent appointment and probably some pred to keep you going since you have been on it long enough to not be safe to just stop it overnight. You MUST taper it,

[Cfmad298601 in reply to PMRpro]

many thanks for your input, as always.

I think I went along today with the impression that it would be a follow up about how things have gone so far and to get any relevant tests redone and initiate a review.

I assumed unless there was any immediate issues I would probably come away with a slightly smaller suitcase of preds to see me through for another few weeks, albeit at the lower continuing dose and another appointment in the near future to see how tapering is going.

I felt after having only been on pred for a little over 3 months so far that I would be allowed sufficient time to continue to taper slowly, seeing how things go…..slow and steady? I’ve been doing quite well on pred, no major side effects, and the hunger and occasional wooziness has subsided more so with the lower dose, although my face is distinctly pudgy!!!

Now Im feeling stressed out that an unpleasant drug is being thrust on me too quicklk?

I work full time and now trying to get my head around all this and get myself in to see my gp all within 2 weeks is starting to really worry me

[PMRpro Ambassador in reply to Cfmad298601]

So the first task is to present yourself to the GP practice and demand an EMERGENCY appointment where you can present the situation and express your dissatisfaction with the lack of management. To add MTX after 3 months without a clear explanation why and getting you onside about it is not a good look and one I wouldn't accept. And do NOT skim over the added stress it is causing you.

Why were you started at 40mg? That is a GCA dose. If she thought that was likely she shouldn't have tapered so fast, if she thinks it is PMR, then to have got from there to 12.5mg in 3 months is actually not bad going. If it is GCA, Prof Dasgupta, the UK GCA guru, doesn't consider MTX has a role to play. She is sending out some very confusing messages - and that generally makes me feel someone doesn't really know what they are doing. I may be doing her a disservice - but she must explain herself.

Oh, and a PS: the adverse effects listed for MTX tend to be for the high doses used in oncology. But it can be a thoroughly unpleasant drug and there are absolutely no guarantees it will make a difference - it DOES work well for a small group of patients, but not all.

[Cfmad298601 in reply to PMRpro]

I was down for GCA, as had classic symptoms of jaw ache on eating, sensitive scalp and pain to side of head etc, I had a biopsy at end of oct, which was inconclusive but had already been put on pred 40mg by my gp 2-3 weeks before. I had in the previous weeks experienced PMR symptoms, although didn’t realise, as I thought it was just menopause or overdoing things! But when the head pains started I went to the doctors.

I too thought it sounded very quick to be considering putting me on MTX as I haven’t been on pred that long and wasn’t suffering major adverse reactions, and was happy to try and taper further, with a slow and steady attitude…….

Thanks for your help, this site is so important for all the info from others who know!

[Only45]

Hi Cfmad I just wondered if you meant that your cheek bones are tender when you touch them as that is also one of my symptoms

[Cfmad298601 in reply to Only45]

sort of, yes…it feels a bit tender, kind of a pressured feeling….but only slightly.

My face and around the eyes have gone a bit puffy, a known issue with pred so not sure if some of that feeling is to do with with this.

[Sharitone]

Yes, it's normal for the GP to prescribe the MTX on the consultant's say-so, though a kind consultant would have given you some to start you off.

Obviously you need more explaining, but if they really can't give you an appointment before the pred runs out, I don't see why they couldn't prescribe some more without seeing you, once they have been notified by the consultant.