And on it goes, and on...and on...

[elrose]

Well its official I am an enigma, have been taking Methotrexate for 6mths to combat Feltys (chronic neutropenia) and assist RA, despite several significant increases its done precisely nothing and my haematologist has taken me off it, neutrophils still .5< and RA as bad as ever. She wants to wait for my Rhumy to advise but currently have no appointment (last one was a locum and on a saturday lol) so am in limbo, have been taking steroids for over 2yrs, no DMARDS, no progress

[Hidden]

That sounds like bad news Elrose I'm sorry. Why have you not got a rheumy apt if you have RA and are on MTX? I mean I haven't got one either but I am at least on the list and will be seen again one day or if I have any bad flare ups. Can't really say much by way of advice but hopefully another DMARD or anti-tnf might work well soon for you if only you can get to see your rheumy. TTx

[allanah]

Ah another Enigma! we had Philip not so long ago! That sounds awful for you. I think you should ask your GP to get you to see the Rheumatolgist, or if possible phone the hospital helpline if they have one. Looks like it is not stable yet. You must be tired out, thinking of you. Axx

[tiger]

Sounds awful. Is it not possible for your haematologist to speak directly to your rheumatologist to press for an urgent appointment, hopefully they are based at the same hospital. I would have thought that the haematologist would have more clout than your GP to get you an appointment. Hope it gets sorted soon. Wendy x

[helixhelix]

How awful not have a proper treatment plan. And being on steroids for so long can't be doing you much good in the long term. I would start jumping up & down a bit more - perhaps push your GP to request an urgent appointment, and keep hassling the hospital. You do need to get the specialists to work out what's best for you. Good luck.

[elrose]

Somewhat in defence of the Rhumy, had regular appointments until my consultant retired in October, they seem to be struggling to catch up from this. GP is good sort and last time I saw the locum she sent me for MRI and Xray and made noises about leflunomide...it doesnt help that I just dont seem to be responding as they anticipated I would. Am probably just a bit fed up and happy for an opportunity to vent amongs people who get it...so thanks all for that...will update once I have any news

[Gina_K]

Eloise,

Sorry to hear things not working well with meds, I was on steroids for two years in the early days, but a word of warning,in my opinion they ar a great bridging medication but the problem is you damage your joints unintentionally as you are not aware!

I hope you ar taking calcium & vit D supplements? Also, request a dexa scan, see how healhyyour bones are. It also depends on dosage 7.5 mg is supposedly the safest longterm dose?

Be aware, educate yourself, be pushy, it's your life after all.

Regards, Gina.

[elrose in reply to Gina_K]

I am on Vitamin D and Androlic Acid to combat the prolonged effects of steroids, I take 10mg steroid daily, this is not an 'early days' situation though, diagnosed RA at 23 am 38 now - the problem stems (apparently) from the fact that most DMARDs surpress the immune system and with Feltys mine is already compromised so it is a bit of a balancing act kill or cure so to speak.

Never heard of a dexa scan so will look into that and heamatologist may prescribe something at my appointment next week....tbc

[Gina_K]

Hi again,

Oh I understand better now sorry. Will look up Feltys as I have never heard of it, where do u live?

[elrose]

Feltys is really Feltys Syndrome (apparently named after the doc who identified it in the 20s) and most articles detail it as a rare complication of RA, low neutraphils=low immune system and result in frequent infections and regular flares. I live in Cambridgeshire.,

[helixhelix]

If you have extra problems with your immune system I'd have still thought there were other DMARDS that you could try that aren't as immuno-suppressive - like gold perhaps, or Hydroxychloroquine? Keep asking - hopefully someone will be up for solving an enigma! (Round my way dexa scans are routinely given to the over 50's to check that not at risk of osteoporosis - but I'd have thought should also be available to others).

[Hidden]

Hope you get things sorted I am doing reasonably on gold ,

You can cheat your way to a dexa scan. I took steroids on and off for nearly 2 years! go to your local chemist and make a medicenes use review appointment.. highlight your concern on long term steroid use ther pharmacist will write to the GP and they will organise one x