I've been on mtx for just over 12 months now, initially tablets but injection since October.
I caught a bad cold & chest infection in October & was put on antibiotics, a couple of days later developed severe pain on my left side in my back, left side & front just under my ribs.
The gp diagnosed pleurisy & gave me stronger antibiotics & said to leave off the methotrexate for 2 weeks, the pain got much worse & was sent for a chest xray, this was clear except for a significant shadow under my left breast, gp arranged for an urgent ct scan.
In-between this the pain diminished slightly, I started the metoject again but the 2nd dose the pen failed, my joints were really getting painful & for the first time i realised how much mtx helps, couldn't wait to have my next dose.
Spoke to gp Saturday as if I get an itch on my forearms & scratch its like the skin underneath had bled, he's going to arrange for another blood test to check my iron levels (I think that's what he said) anyway, he said my scan was clear & how he'd thought I had bone cancer! I was so shocked with this I just whittered on 🙄 but said the pins & needles in my feet & legs were still as bad, my b12 levels are more than ok & he said it could be neuropathy caused by either the arthritis or meds.
Had my next dose of metoject on Monday & by last night & this morning my back is as bad as before, could both the pins & needles & the pain in my back / side / front be caused by metoject?
I'm going to email the consultants secretary today to let them know as I don't have access to the NHS helpline but I'm worried that if I have to stop it, is there an equivalent medication available? I'm currently on etoricoxib, hydroxy, lefluminode & gabapentin.
Any info would be great, thank you
Deb x
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Garnacha
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You will possibly need to get on to your Rheummatologist’s NHS list…as if you need to move to a Biologic drug….which can be a follow on after Mtx fails…they are only available on the NHS.Although the price of Biologics has come down considerably the NHS consultant still needs to apply for funding to the NHS local health authority …..so when you speak to your rheumy’s secretary…ask if that is possible.
Your arm looks very sore…..& in fact looks very similar to a rash I had..which looked sore but wasn’t, & it turned out to be a post viral rash after I’d had flu…& which I now get in a much milder form after my annual Flu jab.
Thank you, yes that's what the consultant said in January this year and wrote to my surgery, they didn't do anything about it until I chased them up in March, when I managed to speak to rheumatology in May, they said there was currently a 77 week waiting list. When I saw the consultant in September he said I'm more than likely going to need biologics.
I'm just trying to put an e-mail together which is looking more and more like a novel 😂 so just adding bullet points etc.
The annoying thing is the company I work for have just changed providers for medical insurance and the secretary (who happens to be my mother!) said when she was asked if anyone had any existing medical conditions she told them not that she was aware of! I'm still waiting for the membership details to arrive but worried that I may not now be covered for anything for an initial period so will have to dip into our savings to pay for the consultant 😟 x
Your immediate action should be to ask your Private consultant’s secretary to ask if you can join his NHS list…if he has one…. then follow up…asking what medication he has in mind to prescribe……if it is a Biologic…it cannot be prescribed privately…so do make moves to get an NHS Rheumatologist.
As you have been told NHS rheumatology lists are extremely long…& depending on where you are in the country….it is getting harder & harder to get on an NHS rheumy’s list
Unfortunately it doesn’t matter which medical insurance company you belong to , the cover for RA is restricted on all of them….& they will have access to your medical records once you make a claim….so if you want to be covered at all, fess up now before they find out you are receiving treatment for RA.PMI’s regard RA as an incurable disease …& will only cover certain parts of the treatment….excluding drugs.
I opted out of PMI ….because as you age….even if you don’t make a claim the subscription escalates alarmingly….& once you are settled on a suitable NHS drug regime ….you often only need to see your Private consultant a couple of times a year….which outside London is not too expensive.
He only does private now so not an option unfortunately, he's already said I'll probably need biologics & can't prescribe them, the plan we agreed in September was to see if the increase in lef helps, if not to try sulfazine which can take up to 6 months to work, we also talked about steroids being a last option if sulfazine didn't work to tie me over the last couple if weeks / months till I see an NHS rheumatologist.
Yes, I'm aware that PMI's have access to medical records & already don't pay for routine blood tests, it cost me a thousand pounds last year, I won't know what is covered until I receive the documents & am expecting them in the next few days as the policy began on the 01/12 x
I think it's incredibly important to give full details of any medical issues to your insurer. Even Age Concern refused me cover (travel insurance to Europe) after I had a small stroke, just slightly more than a TIA in that it made my speech slurry, some six years ago. In the event of a claim they go through all your medical records with a fine tooth comb. The NHS for anyone in the UK is the way to go.
I smoked for three years when I was young, and stopped about 56yrs ago, which bumps up any insurance enormously, because it is still highlighted at the top of my records. Well done New Zealand with regard to their new law about to come into place.
I'm sending an e-mail to the consultant now, I don't have access to the NHS rheumatology department until I've been seen by them, probably next November! x
Does your Private rheumy not have an NHS Practice ? If he takes you on to his list that would solve your problem.Most PMI co’s do require that the doctors they use do have an NHS practice.I remember when a consultant I saw privately opted out of NHS work…..my PMI Co…wouldn’t authorise him.
No not anymore, but he is included on the PMI list of approved consultants, I didn't know he wasn't working for the NHS when I first saw him, the consultant I've been referred to I've seen his name on the spires website so was thinking I could mention this to my current consultant & see what he says
Before you see the new guy Privately make sure he has an NHS Practice & he will quite likely see you sooner on the NHS…once you are in the system…if you don’t like him…you can always change..but point you are at now …it could be really important to move on from regular DMards.
Thank you, yes was just saying to my husband that assuming my current consultant advises a f2f appointment, I'd say who the NHS consultant is & that I believe he undertakes private consultations & to move things along faster that it maybe worth me seeing him.
I know I'm in the system as I asked the NHS dermatologist to see if he could see where I was on the list & whether I'd been categorised at that time (September) as urgent, I was still down as a normal referral x
As you will see from a lot of members here…if you don’t have easy access to your NHSrheumatologist you really have to keep in contact to get seen…maybe even look out of your immediate area & see it waiting times are shorter.
I too developed neuropathy in feet and legs. I stopped methotrexate over a year ago but neuropathy has not improved so I'm guessing it's not methotrexate related for me.
There are many alternatives to methotrexate within the DMARDS but if you have exhausted them you could be referred for biologics which is a step up. There are tests that need to be carried out to see if you are eligible, given they need to apply for funding, but by the sounds of it, you will be. I would try for an urgent appointment with your rheumatologist and go through the alternatives.
Having the doctor tell you he thought you had bone cancer must have been shocking. I'm so glad your tests ate clear.
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