I had a RA diagnosis nearly 2 years ago now, and have been on hydroxychloroquine the whole period which has not improved symptoms. I had a high RA indicator at start but no inflammation throughout this period or joint damage. Nothing shown up on MRI or ultrasounds.
I have a general weakness and stiffness in my hands and both I and my consultant have noticed a few of my fingers are moving closer together. Often painful and can wake with tingling in hands as if i have slept on them.
In the last month or so both thumbs feel tender and without strength and discomfort when I grip items.
Guys hospital gave a second opinion during covid, so reviewed my records, saw images of hands and scans, and spoke to me for almost an hour. They are recommending I start methotrexate for 6 months. My own consultant is reluctant and is no longer seeing patients during covid.
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colindgreen
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Hi Colin.Obviously we can't give medical advice but if it was me, I'd be wanting to see some improvements by now and would be keen to try a different medication.
Do you know why your consultant isn't keen? It seems strange that he/she isn't seeing patients and I would have thought that the department should be arranging for someone else to take over, if only temporarily.
I was diagnosed about 18 months ago and my medication has been adjusted several times in that period as things weren't improving enough to satisfy me or my team. I've been on Methotrexate and Hydroxychloroquine from the outset and after increasing my Methotrexate dose to the maximum, Sulphasalazine was added. Things have really improved recently but I'm due to see my consultant next week (having had several nurse appointments this year) so will find out then whether she's happy with my current regime.
She has been waiting to get a baseline reading for inflammation, so if she changes meds she would have something to measure improvement. She has also bee n open about the cost implications.
I have been given a general number at the RA dept to call. I will call them and see how things progress.
I am worried with the new symptoms in my thumbs, which I shared with my consultant. It was at that point she said I needed to phone, as she was being moved to deal with covid.
The cost implications? I've not heard that before regarding DMARDS although I know that it can be an issue with biologics.I've been having regular blood tests since I started medication so monitoring levels hasn't been a problem. Where are you based? I know that there seems to be a postcode lottery regarding treatment which is very frustrating.
I've used the rheumatology nurse helpline a lot - partly because of encouragement from others on here - and have come to realise that I need to be proactive if I want things to keep moving in the right direction.
I'm not that knowledgeable on the subject having only started meds, methotrexate too early to tell if it'll work, but I agree with Boxerlady with regards to the cost issue, I believed methotrexate was one of the least costly? I did however read on a Rheumatology website where the government guidelines/advice to them with regards to Covid was to be wary of prescribing the likes of methotrexate unless the pros outweighed the risks. Apparently hydrochloriquine was deemed to be of a slightly less risk. I will try and find this article to post a link but seem to have lost a lot of my bookmarked pieces.Regardless, I agree too with Boxerlady in that I'd be keen to try something else.
rheumatology.org.uk/practic... that this gives you answers as such, just that it may explain the hesitance from your consultant and why they're waiting on inflammatory markers. Although I have learned from this group that inflammation doesn't always show up!
Thank you both. I have today contacted the helpline number the consultant gave me and also asked Guys for a copy of their report, which I am yet to see.
In terms of cost, I was told I would require weekly blood testing due to existing issue with my kidney function. I assume this may be a factor, plus it raises my risk to covid slightly on the risk stratification chart, and I suspect, methotrexate injections cost more than hydroxychloroquine.
I assume my local hospital will need to provide support for new or deteriorating symptoms for those patients open to them.
You are probably right there, I am only having to get bloods checked every 2 weeks as I'm at the start and this will go down to monthly, then 3 monthly after 6 weeks.I certainly hope your hospital does provide you with the support they should! All the best.
Good that you've contacted them, hopefully you'll get some useful answers.There are a lot of different thoughts re Covid risks (basically because no one actually knows for definite, I think!) but there is a school of thought which says that uncontrolled RA is a bigger risk factor than DMARDS and that was one of the reasons why I eager to get mine under control (quite apart from the pain and possible long term damage!)
It's common to start on Methotrexate tablets rather than injections but you're right, the injections are more expensive.
If you have an existing kidney issue then that changes things and makes your consultant’s reluctance more understandable!
I think MTX tablets are about £7 and injections £17 a week - so not a huge extra. But blood tests are much more as also have to factor in cost of nurse and lab. However for quality of life it is really not too much to expect!
This is the text below from the BSR guidelines Niao linked. It make me spit slightly as all phrased in terms of discussing options with the patient, and it doesn’t sound as if you had any meaningful discussion!
But was your MRI of your hands or neck? As my weakness and tingling in hands is clearly linked to disc degeneration in my neck...
“Patients will be nervous about starting any treatment that might increase their risk of infection. A discussion on treatment options should take place that should include consideration of demographic factors and co-morbidities known to be associated with increased risk of serious infection and complications of COVID-19 (e.g. increasing age, especially >70 years, or for those with co-morbidities such as diabetes mellitus, chronic lung disease and ischaemic heart disease).
For patients starting DMARDS, consider using those with a shorter half-life (particularly for those at highest risk of serious infection and complications of COVID-19). If appropriate, opt for sulfasalazine and/or hydroxychloroquine rather than methotrexate or leflunomide.
Similarly, for patients starting biologic or small molecule inhibitors or switching biologic drugs, careful discussion with the patient is essential, taking into account patient-specific risk factors that increase risk of serious infection and complications of COVID-19.
If there is significant disease activity and the patient understands the risk, then it is acceptable to move forward with these drugs. Again, we advise considering the use of drugs with the shortest half-life (eg etanercept, JAKi). We're aware that some homecare providers stopped new registrations and were not sending out nurses to demonstrate how to give the first injection, but these problems have now been resolved.”
Thank you for the comprehensive reply. I raised the issue of nerve damage in my neck when I was aged 5 or 6 at the outset of my journey with my consultant 2 years ago. Then when I was 17 or so; I had an operation around my left eye to reduce inflammation from water retention. The water retention was due to damaged lymph nodes following nerve damage in my neck.
She said no further investigations were needed but has always been a niggle, as I have neck issues from time to time but were never investigated.
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