Hi Rich

This is a palaver and a half and one you should not be being put through. It's very disconcerting to think that for all you know the blood test results could just be sat there unchecked with some problem showing up that is going undetected. For example, when I had neutropenia last year I picked up the drop in neutrophils immediately from my blood test results (always check them myself simply because I like to be in control!). I posted on here because I was concerned and not too sure and Jenni picked it up and phoned NRAS who contacted me. I then got in touch with rheumatology and methotrexate was temporarily stopped. As it was the problem went on for four months but had it not been detected it could have had very serious implications.

Methotrexate is a fantastic drug but, as you know already, it doesn't suit everyone. It can take the full 3 months or so to kick in. It sounds as though the problems are worsening for you and possibly something additional needs adding to the mix. In the meantime do keep the pain relief well topped up, this can make a big difference to pain levels and functionality. Sometimes the side effects do wear off as the body gets more used to the medication.

Our pharmacy (part of the Health Centre) regularly ask to see blood monitoring booklets for mtx patients, especially after dosage problems leading to fatalities. Our blood results are checked by a nurse, not a doctor, and prescriptions are on a 12 monthly repeat. I was often asked about side effects too. However, I think this may be a local arrangement, perhaps similar to Doreen's. The monitoring booklet is supposed to be kept up to date and available for all health professionals to see. I take mine along to orthopaedics too , response ... what the hell is this lot, we don't understand any of it! But I like them to know

At least the 17th May isn't too long off. Hope you are able to get something sorted.

Lyn x

Rich

I have been following your story with dismay. I am sorry that you are not getting the treatment you should. I had to give up the Leflumonide because of the headaches so maybe this could be what is causing yours.

We are very lucky in Shropshire that our PCT has bought premises for a new Rheumy team outside of the hospital. It is staffed by two consultants, rheumy nurse, occupational health and if I have a problem I always have a phone call back within the same day if not hour. However, now that PCT's are being disbanded and the decision making handed over to the GP's I wonder if there will be the same level of funding. I am the only patient in a very large practice who has RA and I am teaching my GP about the ramifications of RA. I know if I was a GP faced with dealing out money, RA which only affects 400,000 would be very low in the priority list, so it does not look good for the future of our treatment.

I can understand your reasoning for wanting to stay with your local hospital but you must not let your health deteriorate to a point where it will be difficult to improve.

I hope you get something sorted soon.

Jackie

Hi Rich
It's 5th May - and yes there's a referendum today but equally important I recall you also had next appt today. So hoping that you got some progress & improvement in the way that your RA is being managed....... Polly

Well if consultant sees you at your 'worst' then perhaps will shock him/her into doing something more effective! Good luck. P

Well the saga continues ...
Had appointment with Consultant on the 12th May .. and actually got the write up a few days ago ..
Diagnosis : Rheumatoid Arthritis and Psoriasis

Stepped up MTX to 17.5 then 20 mg given 4 months prescription .. Gp had given me co dydramol for headaches and he stated that i should wean myself off them , he also stated that we will wean myself off the leflunomide (in the consultation) but the write up says pregabalin .. looks like another email.

My DAS score was 4.54 .. which is better than the one i worked out from bloods and nurse appointment that were taken on the same day 3 months prior(DAS 5.5) . (why they could not put the nurses report and bloods taken the same day at the same hospital together to get a DAS score i will never know!)

Felt very odd all this week and violently dizzy (if that makes sense ) ie i feel like my whole body is going to hit the floor and the world is spinning round .. and have to grab hold of something :O Headaches have gone , probably due to the Naproxen temporarily prescribed at the consultation.
Curiously enough i am having more problems with joint pain and tiredness than i did 6 weeks ago .

Got next appointment through .. end of September , which is nearly six months from the consultation (despite write up saying 3 to 4 months) and with Nurse ( which i prefer as from my one appointment with her i received far more info than from all the consultations)
If DAS is above 5 or remains high then they will consider me for biological therapy. :O
I will have been on Incapacity Benefit for 3 years when the next appt comes round in September , my disease is far from under control .. yet i still have 6 months between appointments? Go Figure !!

Rich :)

hi Rich,

well let's hope upping the dose of Methotrexate works for you .. sadly it didn't for me and i'm currently back down to 10mg plus Hydroxy while waiting for the Humira.

i think a GP's appointment is the order of the day for you,

let's know how you are getting on.

Suzanne x

Hi Rich

I hope you are feeling better soon.

Sheila x