Really worried

Kittkat

Hello
I have psoriasis arthritis that was untreated for a long time ( 3 years) I then had a rheumatologist app in which I was prescribed 7.5 mgs of methotrexate. BUTthe man did not examine me at all. I don't know whether he knows how bad I am. There will be around 6 months since my first app and I am on this low dose. i have finger deformities already and I am really worried. So basically should I tell him how bad I am or should I just let him do his job? I feel this 7.5 mgs is no where near enough and I am extremely concerned. Also has anyone had hand therapy for finger deformities (ulnar drift)? I saw a hand therapist but they didn't do anything because I don't do much anyway ( can't work/ too much pain to drive).
Thanks all X

stickywicket

I think something needs to change for you, Kittkat, but I'm not sure what.

I can't remember back to my first appointment. I don't know how usual it is for the consultant to examine you. I'm sure others are more clued up on that score.

7.5mgs is, indeed, a low dose of meth. It's designed to control the disease not the pain levels and not to correct any existing deformities. Having said that, controlling the disease will lessen the pain to some extent. However, if your disease isn't under control (The blood tests will measure this rather than your own pain levels) you need something more.

Exercising your fingers will help to prevent more deformity Try the exercises in Arthritis Care's Healthy Living booklet and/or ask to see a physio. There is a fine, drifting line between making things worse by doing too much and making things worse by not doing enough. The fingers will get worse if you don't keep the muscles strong.

Why not ring your rheumatology helpline and ask for an earlier appointment? I think this is stuff the rheumatological team need to sort out.

Mat48

Kit Kat it is usual to start Methotrexate at this lower dose and to remain there for a while in case the two weekly/ weekly blood monitoring reveals that your body can't tolerate this drug. When I was diagnosed with RA and put on MTX I was in the same boat and really wanted to get on and take it at a higher dose but when I pushed my GP - who prescribed and monitored it for the rheumy - I was told that the highest I could go was 15mg. So I moved up straight to 15mg after 2 months on 7.5 and unfortunately my liver went biserk and I had to come back down to 10mg and wait a few more months until my liver settled down again and finally got up ot 15mg. So this may be the plan for you too? It took 6 months to work for me and then it only worked really well when I switched to injections and unfortunately could still not tolerate it at anything above 12.5mg which wasn't enough for my RA. So try not to worry - you will surely move up doses if your body can tolerate it well. Mat x

purpleowl

Hi Kitkat,

I know about nothing about your condition but would just like to wish you well and I hope things improve for you very soon.

I am on 10mgs of Methotrexate which controls my psoriasis, I started on 5mgs and the dosage was increased to 10mgs after one month.

Take care,

Trish xx

barbara12

Hello Kitkat
You make sure you tell him how bad things are for you, not always easy to get across I know..dont forget we are all behind you good luck..x

Boomer13

Hi Kittkat;

Do you have a date for your follow-up appointment? Please do document all your symptoms as Barbara says; pain levels, describe your worst days, swollen joints, any redness for your next appointment, maybe that will prompt an examination.

The only response I've had to methotrexate is that it seems to have stopped the continual worsening with every flare that was happening before I was on it. I started 10 months ago on 10 mg, which was upped at 3 months to 15 mg and recently upped again to 20 mg. I had prednisone added in a while back because mtx was not helping the severe pain and sequential flaring.

It sounds like you need a re-visit with your rheum and discussion about meds for you. It is hard waiting for meds to work when it takes so long with DMARDS! Did they give you a timeline for booking follow-up appointments?

As I've gone along, my rheum has taken a bigger interest in my PsA, etc as I've been treatment resistant so far. I hope that happens for you too , though not the treatment-resistant part.

Please do push for extra help. You should be re-assessed at 3 & 6 months after beginning mtx.

Best wishes, Anna

Boomer13

And also, Kittkat, documenting your fatigue and stiffness levels as well is very important (you likely know this already, though!) for showing your PsA is still active.

villier

Sorry Kitkat I know nothing about your condition, I just want to wish you well and give you my support.............tc..................Marie xx

Tinky

Hi Kitkat...


I have PsA and I was started on 7.5mg Methotrexate for 2 months and when that wasn't working went up to 15mg. I'm now hopefully going to start
Etanercept soon.

I hope you get something sorted soon,

yvette.

dreamdaisy

Each rheumatologist is different in the way they work - mine only checks my knees for heat, and will occasionally do the DAS score but otherwise we chat. This is probably because we have been meeting for a goodly length of time and we know each other pretty well. She also takes some of her information from my bloods but I do tell her everything I can think of that has altered - my notes come in handy for that.

There is absolutely no reason why you should not request an increase or change to your meds, tell him that you are not finding much benefit and make a point of showing him your hands. It is difficult because we expect them to remember things about us whilst forgetting they see many other people. You won't be telling him how to do his job, you will be giving him the info he needs to do it better. Please let us know how you get on, yes? DD

Kittkat

Hello all and thank you for your kind messages
Appointment is 10th December I can live with that just want to be prepared and I will tell him about my worries about my hands/meds. I havn't had a timeline or anything like that he didn't give me a lot of time at my first appointment.
Will see what he says and update. Will also look into hand exercises might get another hand therapy appointment see what they say+ the exercises in the arthritis booklet as sticky suggested. Thanks again!X

salamander

Do you wear splints at night KitKat? I don't know if it would help with your hand problems but might be worth investigating.

destiny0321

hi i started on the low dose i am now on 12.5mg on sunday & 12.5mg on a monday 6 days folic acid on sunday no folic acid & on mondayfolic acid with the 12.5mgs not to bad at moment but you have to work your way up through the doses.
good luck have paitence. destiny