I was expecting a face to face follow up in the next couple of weeks with an RA consultant (Oxford) as I have now been on methotrexate for 3 months. I can stand but not walk any distance and my right wrist is hot and swollen so I have had to stop working and can't drive. Not what I was expecting at 62. The RA nurse today said there were no appointments for months and wanted me to transfer to my GP for monthly blood tests and repeat prescriptions. Will this mean that I will not be able to get my medication improved until I see a consultant?
Surely it ought to be better than this.
Any thoughts and suggestions welcomed ....
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spartacus101
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I'm sorry to hear you're in so.much pain and its having such an impact on you.
Were you originally told that there would be a three month follow up appointment? It's so long since I started mtx that I can't remember what was said, or how long it took before there was any improvement, so I can't be of any help there I'm afraid. I'm sure someone else on here will be able to help.I know it's common practice for a GP to take over the prescribing of mtx, and blood tests have to be done regularly for repeat prescriptions.
Did you explain your situation to the nurse and tell her how much you're struggling? I was in a similar position after diagnosis in 2019 but they kept tweaking my medication until things improved. I did have a follow up appointment after about 3 months but I rang the nurse helpline more than once after that when I was struggling and each time they reported back to the consultant and then changed my medication.
Here we have shared care and GP does blood tests and repeat prescriptions but only the medications directed by Consultant. I’d suggest you get back in touch and explain that things are not stable and a medication review is needed. I hope you can see someone to help asap. It is chaos these days x
I used to go to Nuffield in Oxford between anout 2000 to 2010. Initially it was chaotic but once the new building was in place it improved. A lot. So I’m sorry to hear this.
This is not unusual . My GP prescribes part of my meds and carries out the blood tests. My biological meds are prescribed by the hospital with direct delivery. It's called shared care.
Shared care of blood tests and repeat prescriptions is one thing, but if you are in need of more intervention, which from what you describe I would definitely think you are, you need more specialist help. I would ring back and insist you need more help. It's just not right. I'm sorry you are in this position.
I started on Methotrexate in February and had face to face reviews with the nurse every six weeks and as blood tests showed the presence of inflammation the dose was increased.
A month ago I had a face to face appointment with the consultant and as everything seems to be under control I have been transferred to shared care but was told that if I have any issues with pain etc. I have to phone the help line straight away.
I can understand how you must be feeling as you are new to this RA malarkey…as I am, too….but if you are not feeling the benefit of the meds then something else needs to be done to help you.
Definitely needs a call to the rheumatology department and perhaps a call to the GP if you can access one….I was told that they can contact the consultants for advice.
As you mention you are also new to the malarkey can I ask how you feel now in comparison to when you started on the treatment? I still feel as if a malevolent alien, armed with a bicycle pump, has taken over my body and keeps inflating joints. Or maybe it is like living life in a too tight wetsuit. I don't mean to be intrusive but am looking to see if hope is still in Pandora's box!
I am so pleased that I haven’t had the excruciating joint pain that resulted in me going to A&E since February but there is that thought that it will come back. Because of this I am reluctant to plan anything.
My CRP numbers have reduced to an acceptable level but I still feel my mobility has been affected but hoping that will improve.
I read of others who are able to live the life with this disease but I am not there yet and wonder whether I ever will be.
This disease not only affects me physically but also mentally so a double whammy to deal with.
Being positive…which I should try to be a lot more often….then I can see that I have improved and so there is hope in Pandora’s box but it has been a very slow and very painful experience!
Fingers crossed that the alien will lose the energy to inflate your joints and you start to improve!
I think my experience would have been far harder had it not been for the support from family, friends, consultant/nurses/GPs, NRAS and the many people who post here….thank you to you all!
A&E in February sounds grim. I hadn't really thought about the lack of an ability to plan before but it is another loss. I now understand that this is going to take a long time. I'm finding being positive quite tiring and just tell myself I am having a completey reasonable response to a difficult situation and that just will have to be good enough. Thank you for sharing and helping to manage my expectations. I hope that with your support team you get to where you want to be!
if I was you I would try the nurse helpline once more. Stressing that things haven’t improved and you need to see someone. If that doesn’t work contact your rheumatology secretaries. Their number is probably on any clinical letters, if not phone the main hospital number and ask for the number of Dr so&so’s secretary. Explain politely that things haven’t improved at all, that you are really struggling and that you would really would like to see someone face to face. Good luck!
Don’t despair…3 months is not long in Mtx terms…..give it another few months. ..& hopefully you will get better results. RA is the marathon..not the 100m sprint.
I was diagnosed 20 years ago in my late 50’s & like you I felt that RA had ruined my retirement..,,& yes it did for a while, but once the Mtx started to take full effect I found life got much better….being realistic you have to give Mtx a really good try….. unless you are having really nasty side effects give it at least 6/9 months before you throw in the towel & ask to change drug. It is very tempting to try a change…but often that starts a pattern of one drug after another…with not much success.
Sadly there just aren’t enough Rheumatologists for them to see both the newly diagnosed & personally monitor those already diagnosed regularly & the situation you find yourself in is virtually the norm these days.
I think your nurse meant you will go on to a Shared Care agreement between your rheumatologist & you’re GP …GP checks your blood tests,& issues prescriptions ( won’t issue a scrip if you miss a blood test,so keep up) & if you tell him,/her you are not well controlled on your present dose of Mtx….,tells your rheumy who will adjust your meds to suit……it’s quite a normal pocedure these days & in fact often means you get to see your rheumatologist quicker if your drugs aren’t working too well.
Hope this makes you feel less abandoned….& that Mtx starts working for you very soon.
Thank you so much everyone for the virtual hug. Although I tried to make the post sound measured I was having a real Buckeroo moment but the support and advice has given me the oomph to get back on the horse!
get back on the horse I was not showing any improvement after 3 months and by phone I was changed to a new med ie nurse took info and discussed with consultant.
I had to try 5 medications and of course every time wait for it to be approved then getting it then waiting to see what happened. It’s a long drawn out process mine took 3.5years as reacted badly to so many.
Life is too short push for a call and discuss what’s going on. You have to battle For everything you don’t need to see them talk is fine too!
The maximum dose of methotrexate is 25 mgs a week. Usually people start on a lower dose, if this is in effective enough it is increased. Only the rheumatologist can increase this not your GP. However your Gp can contact them for advice and rheumatologist could increase your dose without seeing you if your blood tests are ok. Ring your nurse and put pressure on them again and your GP. Often another dmard drug is added if methotrexate alone cannot control your disease. Don’t give up, things will improve but keep the pressure on to get the help you need.
I’ve not seen my specialist since Jan 2020 and feel vaguely resentful when, having managed and promoted my drug regime successfully with no help from my GP, I get a text telling me my bloods appointment will be followed by a medication review.. presumably to cut out one or other of my meds?
I’m on an even balance mostly and if I’m knuckled down to anything less, there’s no safety net to correct an imbalance. I wish I could just get off Angitil and Prednisolone (10mgs) and literally steer clear of the medical profession. But that’s a pipe dream at present.
Don’t worry…med reviews are usually to ask how you are feeling on your present drug regime…& if you feel anything is needed ….so mention your feelings how you feel about Angitil & Prednisolone…. & who ever does the review can forward you feelings to your specialist who will decide what should be done.
I guess you’re right and I shall ask about my adrenal function test as I’ve been on pred for 3 1/2 years now. It really made a difference and still does.
As AC says, they tend to be to ask how you are feeling .I've got one on Monday with my GP. I haven't seen my specialist since March 2020 , biologic nurse Dec 2020. They have cancelled 2 appointments, I've now been given a phone one in July🙄
Yes. Ironically it was better that first year of covid 🙄 My hospital used to be really good. My RA has been well controlled for years but this year I started getting flares, with the most horrendous fatigue. I've got a couple of other issues I'd like to discuss, so I'm hoping my appointment isn't cancelled. I hope you get some help soon.
I always attend GP for monthly bloods and see Rheumatology twice a year. Works well but if your joints are red and inflamed you should contact RHEUMATOLOGIST again. Good luck.
The hospital did try the 'no appointments for months' with me after I refused to fill out forms instead of face to face. I do not have a computer and I'm not filling out medical information online. If people do not fight back pretty soon everything is going to be done online...no face to face. This is devastating for the very elderly and frail, who quite frankly are being given short shrift. Not everyone has access to computers/mobiles, or is capable of using them.
I use a small mobile for everything and have very poor signal in my area. A doctor had to call me back five times as my phone lost signal. It’s a ridiculous way to do medicine! Despite the hospital saying there were no appointments I was sent one a week later for a month later. This is reasonable. If you are not happy email the department. I've found this is the quickest way to get a reply. Phoning is useless. Add you GP into email.
I can only emphasise what others have said in their replies to your question.
Do you have a direct line to the Rheumatology Helpline at your hospital? I have always found it very useful for any advice on drugs and problems of pain. The specialist nurses can act as a link between the patient and the doctors.
I don't know whether 3 months is an excessive amount of time waiting for a result. It was 23 years ago that I started on methotrexate, and I can't remember the early days too clearly. But like all drugs for RD, reactions are personal - no two reactions will be the same.
Don't struggle - ask for help; that's what the Helpline is for. Inflammation must be controlled - it is very damage-causing.
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