I have PMR/GCA/LVV and currently take 1mg Pred and 25mg Methotrexate.
My latest blood results came through on my NHS app showing abnormalities on the liver function tests: Serum ALT 73 (normal range 0-39) and Serum Gamma GT 105 (normal range 0-39). They have never been out of range before (3 years) - although I do not have the results of my previous test as that was taken at the hospital and their results never show on my app. ???
My GP practice sent me a text message at the weekend telling me to ring at 8 a.m. today to book a telephone appointment as the doctor wants to talk to me about my blood results. Excellent, but why they just didn't send me an appointment, with the instruction to call and change it if it wasn't suitable, I don't know.
Anyway... I was due to take my MTX on Saturday but felt it wise to wait until I’d spoken to the doctor today.
I rang the GP surgery at 8 this morning, got the usual recorded voice, “Please hold. You are number 38 in the queue,” and after 53 minutes of holding I finally got through, only to be told there were no appointments left and to try again tomorrow. Crazy. Heaven knows if I’ll ever be lucky enough to get a doctor’s appointment.
I’ve tried ringing the Rheumy Helpline, but get the usual message “I’m sorry but the mailbox you are calling is full. Goodbye.” I will persevere and keep trying them both, but it could be many days before I get to speak to anyone.
Meanwhile, I don’t know whether or not I should take my MTX? I know none of you can tell me, and that I need specific medical advice, but I just needed to vent. Sorry.
I haven’t been feeling too good lately and will be seeing my Rheumy in person next week for the results of a recent PET-CT scan, but if I don’t take the MTX until then I will have missed two doses and whether that will be good or bad for me heaven knows! (I missed doses recently when I had COVID so am loathe to miss them unnecessarily now.)
Rant over. To cheer myself up I'm going to put the TV on , have a cuppa and a biscuit or two and watch the synchronised diving in the Commonwealth Games
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JanetRosslyn
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Hi Janet, it won’t be a major problem if you don’t take the MTX as your ALT’s are up. Ring the Surgery back & explain about the blood test result & that the Doctor wants to talk to you & ask them for a telephone appointment as you need advice as to wether to take your MTX or not.
Initially though they may/should repeat the bloods to see if it was just a rouge result. Have you been on any additional pain Meds as that can make the Gamma GT rise.
I’ve had raised ALT’s & my MTX was stopped by a Locum however, l was sent for an Ultra Sound & l did in fact have a fatty liver - confirmed by a Fibroscan.
Thank you Mrs Nails. I did explain it all to doctor's receptionist already but she wasn't having any of it. I'll give them another ring and stress that I need some advice.
I haven't been on any pain meds. The only thing I've done different is I had the blood tests the day after my PET-CT scan.
Just rung them again - general GP Surgery number - and got a recorded message saying all appointments for today were full and to call again tomorrow or call 111 for medical advice??? What the??? Luckily, I held on the line, somewhat puzzled, and someone actually answered.
I explained again, and stressed that I needed advice. Receptionist insisted that as the message was 'The Doctor has requested you book a telephone consultation to discuss your recent blood test results, therefore please contact the surgery....' then I should continue my meds. Apparently if it was urgent or if I should stop my meds then the Doctor would have put that in the instruction.
I'll keep trying the Rheumy Nurse. Their mailbox is still full.
That is appalling - practice manager???? As for handing on their duties they are paid to carry out to 111 - 111 will usually tell you to contact the GP!
Have you considered going in person to the surgery with the doctor’s note and asking to book a phone appointment then and there? It really isn’t up to the receptionist to act as a triage nurse, is it?
Our GP surgery has a system which allows you to press 1 if you want a ring back when there are hundreds in the queue. If you use a mobile to ring up you can then go about your business knowing you can answer the phone without being tied to the house. Last time it was over a day before I got a reply, but it did come.
GPs are under extreme pressure at the moment, though when you go in for a f2f the surgery seems like the Marie Celeste. My recent appointment ( first since developing PMR 15 months ago) allowed me to get both a hypertension AND a respiratory review done by the GP. The PMR discussion took only a minute or two as everything seems to be progressing to plan. I just needed her to change the 5mgs prescription to 2.5mgs to let me reduce below 5mg per day.
Normally the GP wouldn’t do the respiratory review but she took pity on me trying to negotiate the system knowing that there was no asthma nurse appointment available for over 2 months. I think recruitment is a problem.
Ha ha... sorry, but I have to laugh... It wouldn't work, I've tried it before... I went to reception to ask to make appointment and was told no, you have to phone in. So I stood there in front of her, took out my phone and rang.. and got a recorded message telling me there were no appointments and to try again tomorrow!
I went to reception last week with my covid vaccination cards as when I went to a walk in centre for my 5th vaccine they said my 4th (done at gp surgery) had not been put on the system. Receptionist refused to take a quick photocopy and said I had to take photos and email them in. So I went home and did this. Then I got a reply that they couldn't open the attachments! Hopefully I'll get the nurse to sort this at my next blood test as there's no rush.
Hi , just can’t believe how bad things have got! , just to add it was only when I had a break from methotrexate that I realised it was that what was making me feel ill, perhaps a break would be no bad thing and you could recommence or not after seeing the consultant.
And for me it was the 3 week break from MTX that confirmed it WAS working (return of PMR symptoms).
I did recently hold my MTX dose for one week due to COVID with no change in how I felt. So for me, skipping one week was fine (but 3 weeks too long of a break).
It would be nice for you to have more info/direction from a medical person vs. your gut, but sometimes it’s what we are required to depend upon. Hope you get it sorted and are feeling better soon!
Thank you. Good point! Over the past 3 years of MTX I have had three occasions where I've had to skip it for 2 weeks and I've not noticed any difference, so I do sometimes wonder if it's helping. Lots to discuss with rheumy next week!
That is awful, frustrating and depressing. I would be tempted to write to the GP making it clear you tried to follow his/her instruction and ask for the letter to be placed in your file. The Gp probably doesn't know you have been thwarted. Can't advise on meds but wanted to show sympathy!
Thank you. Good idea on the letter. I think the doctor needs to know.
I will be doing an online prescription request for my MTX on Thursday this week so I think I'll put a few words on there too! (It will have to be a 'few' as the length of the comment section on there is very limited characters) Can't do it before then as the system won't accept it beforehand - 28 days from last prescription.
Our surgery don't read the notes attached to online prescription requests. So I was told after I kept asking for 8 weeks of calcium instead of the usual 4 I get.
No they don’t, that’s why I always ask for the paper copy when I pick up mine…The pharmacy staff told me that when mentioned years ago I’d want more for a trip to NZ.
JanetRosslyn - l’ve just engaged my brain (two grandchildren) it won’t be up to your GP to say what to do re the MTX it’s a decision for the Consultant……Try Rheumy Helpline later - in the meantime don’t take it……
Call the hospital switchboard and explain you need emergency advice but the helpline number isn't working. They should be able to find you a rheumy by bleeping them or put you through to a secretary.
No - if they can't provide a decent support service then they have to pick up the slack. They are paid to be specialists and provide stuff like MTX ...
Hi here in North Devon we no longer have a help line, apparently due to staff shortages. The advice on my latest letter from the consultant was to ring arthritis u.k !!!!!
Does your helpline have an email facility? Ours does, but for some obscure reason, it has to be individually enabled. Maybe worth enquiring for the future, when you finally get through.
I'm on MTX and my ALT was up at my last blood test, which will be repeated in 10 days' time. Coincidentally, I saw my Rheumatologist who said that the elevated ALT could be due to my having had a Covid booster 2 weeks before the blood test. She reassured me that it would be a good sign that my body had mounted a response to the vaccine, as elevated ALT happens when we fight an infection. Ask your Rheumy if they think yours might be due to having had Covid or the scan.
I hope things return to normal for you and me and this is not caused by MTX.
That is unbelievable. I used it today and I was taken to the new NHS app. Normally I just go through the surgery system. I wonder if it is going to be included in the NHS’s grand plan for November this year when they are going to let us know what is going on. (I said that with a straight face!).
Hi Janet, I find when I ring Rhuematology and they ask me to leave a message they call back that day or next. Think they prefer you to leave a message re symptoms so they know more before they call you back
Hi 😊 My ALT levels rose from 12 last October to 137 in March after 10 weeks on methotrexate ! For some “ unknown” reason I didn’t receive any feedback on my many blood tests which should have flagged this up but the mtx left me feeling really sick and very dizzy so I stopped taking it. After many phone calls to the rheumatology dept and an appointment with the consultant I’m now on Sulfasalazine and 5mgs of Pred and my ALT level is now 29 . Not sure if it’s helping yet but have only been on it for 6 weeks . You definitely need to see someone . Wishing you lots of luck !
Hooray!!!! Helpline got back to me quickly. Stop the 25mg MTX until I see Rheumy next week, then Rheumy will decide whether or not to restart it, and possible change of dose, and may want fortnightly blood tests.
Thanks to everyone for your input, keeping me sane
I feel for you, I really do. It is if we are just being left to become our own clinicians. I have found going to the surgery and dealing assertively in person can yield better results, the phone is just another way of them managing contact. Otherwise reluctantly I have had to use BUPA, who strangely have no shortage of appointments with qualified Gp's. Why this edifice has become so poor in places escapes me and I am not convinced by the left wing influenced platitudes poured out across the media by way of explanation, the entire world experienced Covid. If by the grace of god you get the opportunity discuss with your Rheumatologist the possibility of commencing Tocilizumab, you may qualify if the Methotrexate no longer works for you and it does give some peace of mind. Good luck.
Now I know this sounds silly, but how do you pronounce Tocilizumab? Is it tossy-liz-u-mab? Or tocky-liz-u-mab or something else? Don't want to sound stupid to rheumy.
My best guess is Toe-sil-is-umab u as in Uber then mab or alternatively Ro-Actemra if that is easier. I know theses drugs have unpronounceable titles, it's all part of the mystery of medicine. If they called it Chicken curry everyone would get it. It won't be easy to get but if alternatives aren't performing you may be in with a chance, it is a subcutaneous injection you give yourself usually once a week. If you get it a nurse from Lloyds pharmacies(who deliver mine) will visit you and show you how it's done, very easy.
UPDATE: Well, it appears someone in the NHS is still working amazingly well, and thankfully for me that’s my Rheumy!
Even though I’m due to see her on Monday, I got a phone call from her this morning to ask how I was. She wasn’t aware that I’d already spoken to the Helpline.
Anyway… she said she’d just seen my blood results, that she wasn’t happy with them, that I should go to the hospital immediately if possible to have them repeated, and that she would phone me back tomorrow - even though I reminded her that I’d be seeing her on Monday.
She chatted to me for almost ten minutes, asking lots of questions about how I was feeling, and I felt she was actually listening to me and taking care to understand my answers.
Apparently she isn’t too happy with the result of my recent PET-CT scan either (thoracic issues), but told me she is currently having the results re-analysed by someone else as they are sometimes ‘over-reported’.
So… I’ve been to the hospital, had my bloods taken by a trainee under supervision (that was an experience!) and now I’m back home, having stopped off at the shop for a well-deserved Magnum ice cream 😊
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