Hi

I was diagnosed about 8/9 months ago and to be honest was starting to feel better especially after
stopping the steroids. The last 6/7 weeks I cannot get on top of viruses, chest infection, nausea, sore ear
and fatigue like I've never had before. Bloods have all dropped a bit and LFT (ALT) has gone from 26 to
104. Not really sure what that means but I am going back to weekly blood tests and have to stop methotrexate
until I see consultant again next week.

Dont know if this is flare up?? just bad luck re viruses or plain old age??

Anyone else have/had similar. Feel like I'm losing control

Rosie

Hi Rosie
Sorry things are so rough for you at the moment, good idea to stop the methotrexate as it sounds like your immune system is very low. Sympathise with you as it really can feel like its never ending! Write everything down before you see your consultant so you can give an accurate picture of how your feeling, and I really hope things improve. Sorry not much help but you are not alone!
Take care
Love Ceri x

Hi Rosie
Really sorry to hear you are feeling so down and dare i say "crap" at the moment, I have been in your shoes and its not good. It could be that the Methotrexate like most of the Anti TNF drugs most of us take has lowered your immunity, If you have a Rhumatoid nurse specialist have a chat with her and tell her how you are feeling, let alone having a low immunity and catching everything going (that has happened to me ever since i started on the anti tnf's) the methotrexate could be effecting your liver, that happened to me and they took me off it and put me on another drug. Have a chat with the team you see. Hope you feel better soon. Judy

Hello rosie
feel you could almost be writing about me. Also diagnosed last summer,only on mtx (20mg) and have felt by and large really well from march until about mid may, with only the occasional paracetemol or anti-inflammatory necessary. But for the last month have felt dog tired. I know it is difficult to measure one person's fatigue with another's but for an example today said I'd go with my husband to pick up something from electrical shop which we'd had repaired. Didn't feel up to until about 1p.m. felt sick and tired all the while I was out (total about 2 and a half hours - lots of traffic works and back via the supermarket, watched an hour's telly and have just woken up again at 7.00 p.m (I'm in holland). I went to the gp mid week to get blood tested as it has really begun to worry me that I am so tired, but have a crp of just 4 but high alt level of 91. Whereas we can identify the alt level as being a sign that the liver enzymes are too high, we're also told that fatigue is part of RA. It is difficult to know whether the meds are not working as well s they did or if it is a flare. I am interested that you have been advised to stop with the methotrexate, my gp didn't seem to think an alt of 91 was too much of a problem, though he wasn't sure which was the alt and which the ast. I don't however have all the infections that you seem to be plagued with which must bring you down so much. I have had a miserable day too. I shall be interested to hear you get on with the consultant.
with love
.....eve xx

Hi Rosie. Sorry you are feeling so bad. I hope you are much better soon.

Sheila x

Hi Jenni

No, I didnt have any alcohol. A plan sounds like a good suggestion. Although I've had some up an down days
since I was diagnosed I have never felt so poorly before. I get so nauseous within an hour of eating/drinking.

Eve, my rheummy nurse rings me the same day as I have blood test with the results. I was told that they do not
like the ALT to go higher than 50, it reached 94 last weekMonday so I was called back in to the hospital
for more blood tests and was told to stop the methotrexate. Thursdays test was ALT of 104.

My neutrophils are also low and so borderline neutropenia and HB dropped also.

The roof of my mouth has been extremely sore for a week now and pain in my ear when I eat.

I will let you know how I get on at hospital Monday. I agree with you it is so hard to know what
symptoms are drug related and what are down to RA.

I hope you all have a good Sunday.

Love Rosie

sounds positive.

milk thistle can help cleanse the liver- might be worth a go!

Hi Rosie
Pleased that your feeling happier after consultation.. Good luck and be very interested to see how you get on! xx

hi rosie
feeling a little envious that you've been given a three month respite and believe if you feel this is the way forward for you with how you feel at the moment then you would kick yourself if you didn't try it. When you go back on the methotrexate at least it will be with the knowledge and experience gained from this respite period. You mentioned they don't like the ALT to go above 50 - mine has only ever once been below 50 and there's never been any great concern shown except of course they have been keeping an eye on it and I'd be interested to hear at what ALT level others have been taken off mtx. I phoned my rheumatologist who recommended a reduction to 15mg of mtx in view of my raised ALT (94). I had over the last couple of days with this awful depressing tiredness considered "respiting" myself but at least psychologically feel better even about this small (temporary?) reduction. I shall be reading your posts with interest over the next few months rosie.
.....eve x

Hello ladies

Well I have had a great month, psychologically, not taking any RA meds.........but......................sadly the last few days I have been in so much pain
and realise that I have to start taking them again. I guess for me I needed to prove to myself that I do really
have this disease. A part of me has been in denial for the last 9 months. I have been taking co-codamol and ibuprofen but nothing else.
I'm back on 6 sulfasalazine a day. No methotrexate at the momeny - I see consultant mid august and will have to see what
he decides as my liver function went haywire before.
I am eliminating grains from my diet with the exception of rice - I re-introduced wheat for a day and had real intestinal problems so thbimk
I am sensitive to that. I am disappointed to be back on the meds but guess at some stage I had to accept that this is real.
You probably think I am stupid--I feel it now!!! hey ho. My hips have been really painful - for some reason I thought RA didnt affect hips - duh!

On another note I have been diagnosed as having a basal cell carcinoma and am having it removed at hospital on Thursday.
Weird really - I have had this mark/freckle/whatever for 40+years and suddenly it turns into a carcinoma.

So that's it girls - I tried it and failed - RA wins

Love Rosie x