Revert to lower dose of methotrexate due to blood tes... - NRAS

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Revert to lower dose of methotrexate due to blood testing becoming unavailable?

Braecoon profile image

My methotrexate has just been increased from 15mg to 20mg and I am now on the fortnightly blood tests for next 6 weeks, so do not know what happens if GP surgery is closed?

Update: had my first blood test this am. Receptionist refused to let me make my next fortnightly appointment. Explained that I had to be monitored otherwise I would not be allowed to receive my injections, and that I would need to speak to a GP about this. She reluctantly gave me next fortnight appointment!!!!!!!!

Question: if it is unlikely that I will be able to receive blood tests on new 20mg dose, should I consider to go back down to 15mg as I have taken that dose for 8 weeks with no problems with bloods and would feel safer (it would be S*** law if the 20mg turned out to upset the blood chemistry and then there was no way of knowing this)! I’m not looking for anyone to advise, it’s just that I do not want to be a burden on a very ‘over stretched’ NHS, if I can be sensible and work out what would be prudent in everybody’s interest, especially if blood testing is going to be put on hold! Interested to see if others are having similar problems?

25 Replies

Hi Braecoon

I have gone from 15mg to 20mg with no problems. I’m now increased to 22.5mg and my Rheumatolgy nurse said it’s not a big increase but it is an increase, and if I don’t tolerate it then I just drop back down. Like yourself fortnightly blood tests. I had my first 22.5mg on Friday and i didn’t have any side effects from the increase, nothing, so in that respect my body has tolerated it fine. At the moment I’m not thinking of reducing because the higher you can tolerate the better. I have never felt so good being on this drug, the fatigue, stiffness, the pain it’s just not there anymore it’s given me my whole self back. Realising what RA was making me feel like before the methotrexate I don’t ever want to stop. And my worry was I’m only 8 stone with the increase but I’m absolutely fine on it.

I hope this is helpful.

Braecoon profile image
Braecoon in reply to Azzure

Yes, not worried about side effects just worried in case bloods go out of sync and cannot be monitored. Perhaps just had an over zealous receptionist (there are 1 or 2 at the surgery that would put an angry Rottweiler to shame).

Sit tight and get the next bloods and keep asking for fortnightly as you’ve just done - I suspect the receptionist is under stress with all this and being a front line worker to-boot! Also speak to rheumy team if any further issues with getting blood work booked.

All the best

Ali

Braecoon profile image
Braecoon in reply to Ali_H

Thanks, will do.

Keep safe and keep sane👍👏

I have my bloods taken at home and to be honest it is so much easier and worth the £10 it costs, by the time we have spent time getting to the hospital for the test and the car park charges and wear and tear on the car it works out to come out evens. The cost to my system is great I don't have to worry about getting there. xxxxx

Moomin8 profile image
Moomin8 in reply to sylvi

🤔Interesting...blood tests at home? Who does those?

sylvi profile image
sylvi in reply to Moomin8

Plebottomists come out to your house to take your blood and they are in the path lab same day just like if you went down the hospital. Look in your local shop window you will find one there .xxx

Moomin8 profile image
Moomin8 in reply to sylvi

I've looked online and there's nothing near me unfortunately. I live in Essex.

Braecoon profile image
Braecoon in reply to sylvi

I am in North of Scotland - nothing practical like that I am afraid

I’m on methotrexate and recently added sulfalazine. Rang the surgery yesterday to make my regular blood monitoring app and was told to come in as normal unless I have any symptoms of COVID-19. Receptionist sounded incredibly stressed on the phone they have a difficult job at the best of times but are right in the front line of this. Keep well everyone xx

Interestingly had pre -planned appointment with RA consultant yesterday. She said some GPs are stopping doing blood tests so if that happens for me to go to the RA department and they will do it for me. If a problem occurs do contact your RA specialist nurse - many will still be working and may be doing so 'remotely' from the hospital and therefore available to give guidance. Blood tests are important - my WCC, neutrophils etc have needed monitoring as all over the place. They do want to keep us as healthy as possible. Hope that gives some reassurance. Kindest

J1707 profile image
J1707 in reply to RosieA

I think it will come to having appointments for bloods so there will be no waiting time. My RA department is in a separate building which is the maternity unit. Have to walk through maternity reception pregnant women galore past the entrance to labour and premature baby wards.🤔🤔🤔how’s that going to work with isolation?

RosieA profile image
RosieA in reply to J1707

It is very tricky. One has to assume as the days and weeks pass that they will iron out the difficulties - maybe a tent - one in a time type thing. Would make sense especially in warmer months - no one standing close to each other. A time to be creative I think.

Braecoon profile image
Braecoon in reply to RosieA

Thanks very helpful. I would have thought GP service has to retain some functions so as to not putting pressure on NHS. Rheumy nurses & doctors may be deployed else where when the ‘peak’ hits. Nurse teaching colleagues are being asked to be on standby - very uncertain times.

Hope your WCC get sorted soon - best wishes

RosieA profile image
RosieA in reply to Braecoon

Thank you. I think some dentist may too. Meant to have work done in two weeks. Consultant thought it wouldn't happen - anyway dentist now off self isolating. May end up minus a tooth as have latent absess, minor in the grand things.

Ask at your next appointment...start making a list of everything you will need to know...that will hurry things up.

Braecoon profile image
Braecoon in reply to AgedCrone

It was the practice nurse that warned me that I may have problems booking next appointment - she said under the circumstances she could offer no advice, and updates were changing on a daily basis.

AgedCrone profile image
AgedCrone in reply to Braecoon

A lot of GP surgeries now aren’t having appointments ...you just got a telephone appointment and arrangements are made to see you if the GP thinks your problem is urgent! A good idea as a lot of people were trying but to make apt’s just to get a prescription.

I am in exactly the same situation . Upped my mtx last week to 20mg from 17.5 mg. I am due a blood test next week at the hospital. I also take ACE meds for hbp and apparently they are one of the meds which cause,a really bad outcome if you catch the virus . So I am nervous about going out let alone to a hospital ! I am going to phone the rheumy nurse today for advice .

I’m due mine in couple of weeks but only now government says stay home for 12 weeks. It’s very scary times

I'm also on Mtx and fortnightly blood tests and had my most recent at the GP's surgery yesterday. Like many I think, my GP's are currently only doing telephone appointments (unless absolutely necessary otherwise) and have cancelled all non-essential and/or "routine" testing, but both the nurse and receptionist assured me that as far as they were aware, "essential" monitoring for drug reactions etc. would continue to go ahead.

Of course, no one knows how things will progress, but as far as I can tell, for now at least, they are trying to prioritise what is/isn't essential whilst also protecting their frontline staff/medical professionals in case they are needed for more urgent action in the future.

On the plus side, I needn't have worried about the potential risk of attending a busy surgery, the waiting room was completely empty and I was seen within minutes. Almost better than going privately ;-)

Braecoon profile image
Braecoon in reply to cass24

Perhaps I just had an over zealous GP receptionist!!!!!

I think I would be happier reverting to 15mg dose (better the devil you know metaphor).

Yes, GP surgery not as busy as it normally is - I did sit as far away from others and used the hand sanitiser at the reception desk!

cass24 profile image
cass24 in reply to Braecoon

I guess different GP's may have slight different approaches, after all, pretty much everyone is making it up as they go along right now but I would like to think/hope (unless things get really dire) that vital monitoring will continue...

That said, I do understand your concern... I'm already wondering if they're going to suggest increasing my Mtx dose at my next (imminent) appointment and how I will feel about that if they do ;-)

With a pandemic in full swing it is vital that blood monitoring is continuing.

Hi there,

I’ve been taking 20mg for 7 years and now have my bloods taken every 8 weeks, I was offered 25mg a few years ago because my hands can’t make a full fist. I said no and kept the extra 5mg in the bank so to speak in case I feel worse at some point. Regarding your bloods being taken, this must happen 100%, whether it’s 2,4,6 weeks. People do not understand the importance so next time ask to speak to someone such as your GP, Nurse or the hospital prior to the week your bloods should be taken and I’m sure you’ll get it sorted. Coved-19 will not affect my usual routine concerning my RA until told otherwise.

Stay healthy

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