Recently diagnosed with RA, so looking for a community to share experiences with etc. I have been looking for a group to go to in my area but can't find anything.
I have been complaining of various aches and pains to my GP for a while now. She just looks at me and says it is due to osteo arthritis, and or tendonitis, and there is nothing much she can do about it. She did not want to prescribe any anti inflammatories as I have high blood pressure. So I didn't go to her as things got worse. Luckily she did send me to a rheumatologist a while back for cortisone injections in my hands, and when I went to see her recently, she noticed how badly I was doing and sent me for blood work. Lo and behold, RA.
So I have been on injections of MetX for 3 weeks now. Injections do make me tired and somewhat dizzy. this past week I do have an upset stomach, but I don't know if it is the injections. My GP called me to say my hemoglobin is low, but my rheumatologist says it is not to bad. I do wish they would get together and agree on something. Question is, do I continue to inject and hope I get over these issues? How do you know when it is time to stop and try something else? Is three weeks to little time to tell?
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Joeyrabbit
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Thanks. How do you get access to a rheumy nurse? never heard of it nor do I have a blood test result book. Is this something my rheumatologist would know about?
Contact your consultant. As to speak to his/her secretary and explain about not having your bloods monotered. It was my consultant who gave me my rheumy nurse who is worth her weight in in gold..... She is always at the end of the fone when I need her. You really should contact you consultant if you are on MTX as you MUST have bloods done regularly. MTX is a very strong drug, used in chemotherapy. Also contact your GP as soon as possible too and get this sorted......that is very lax of your rheumy people and your GP not to be having your blood monotered. Let us know how you get on. XX
I do get my blood work monitored by my rheumatologist. I am from Canada, so it sounds like some of the services offered are different. Was fine for the next two weeks, now after my sixth shot, I find myself very dizzy for the past two days. I just hope it will pass, and not be something I will have to deal with regularly. Joints do feel a lot better though.
things are a bit different in different places. I'm mostly based in UK, where I get blood tests done every 6 weeks or so. But I'm moving to France, so went to see a rheumatologist there to check that I could swap over smoothly, and was told I'd only that their standard is have blood tested every 6 months! So having spent years complaining about having to go to the hospital for the blood tests I now feel that I'm being deprived - how stupid is that!
But if you're feeling wobbly then call your rheumy team just to tell them and see if they'll check it out. It's likely to be nothing as it can take several months to adjust to MTX, but best to check. Polly
Gosh Polly, I am a bit outraged that the Consultant in France would only check bloods every 6 months! Maybe you could ask to have them checked every 3 months. That is my schedule. My Rheumy wants current results to see when he sees me, so I get the labs done 2-3 days before my appt with him, and he has them right there to look at with me and discuss whatever. Alot of things can come up in 6 months!! How often will you see the Rheumy? Hope you can become confident in him. Loret
Yes I thought 6 months was a bit too long a gap too! I haven't decided yet what to do, and whether to swap countries (much easier here in Europe as they're closer together) but the rheumy services will be a big factor in decision making. px
Hi Joeyrabbit, welcome you have come to the right place to get help and advice what we don't know we can find out for you, the way I found my rheumy nurse was I went on the web page of the hospital my rheumy doc works went through the RA staff list, good luck mattcass
I'm surprised that you have not been given a blood result book. This is really unusual. It's a light purple coloured book, unless it changes colour with hospital. Failing intuitive info from the book than MattCass is right.
Sorry to hear you struggled to get diagnosed, but at least you know now so can start to deal with it. This is the maybe the hardest part, when you're still in pain. meds haven't started to work yet and you start fearing the worst. One of the things I found most surprising about RA is how long everything takes. So three weeks is really not very long at all. I'm reluctant to say ignore it all, as we're not doctors and don't know your medical history, so it's always best to ask your specialist team or your GP. And presumably you are having blood tests so if it is affecting you fundamentally then that will get picked up. But it did take me 9 weeks to come to terms with MTX, and they were 9 very long weeks. I got my blood monitoring book from my chemist, as I started on tablets so they wanted to see it before I got the next prescription. Now I'm on injections nobody seems as bothered, but I still keep it up as it helps me keep track of where I am. This is a link to it..
Thaks for the website. I will print it out. And it is good to hear the anemia is common.
I agree with Polly - 3 weeks isn't long at all. I am now reducing to 12.5 injectable MTX after 18 months of putting up with various side effects because injectable MTX has worked so well for my RA . I don't have a rheumy nurse or a monitoring book of any sort either but I do at least have good gps who didn't dismiss my aches and pains and got blood tests taken and referral on the strength of them and of symptoms. I get print outs of my blood work from the gp practice if i ask for them (I always phone and write down my ESR) - usually only before consultations with the rheumy. I would trust your rheumy consultant over your GP re anaemia.
The emphasis now is all on early GP referral and I think that's really good - especially with sero negative RA. But the price is high for follow up care because we are too often either left stuck on meds we can't tolerate well or are left without meds for long periods.
GPs are the gate keepers so very important indeed to have good ones I think and some need reminding of this. Mine seems quite keen to learn a little more through me about rheumatology - while acknowledging that she's a generalist. The gps write/ email/ phone my rheumy consultant on my behalf and so should yours. They should be ashamed to have dismissed your symptoms as OA I feel - but then mine felt I was too young at 48 to have OA and I know now that this was wrong too! X
Hello Joey,
I don't have a blood test card either - they are done at the local surgery and as I have been on these meds for some years now I tend to call them a couple of days after the test if I feel worried about any changes in how I feel.
Your post has reminded me, however, that I should ask the nurse for a card next time I go for my test as it is a really good way of 'getting to know your disease and symptoms'.
As Polly pointed out, most of us have slight anaemia - Usually my bloods come back as 'slightly anaemic but no action required' this has become my new norm. I would imagine that it's association with RA is why the rheumatologist is less worried about it than your G.P. Your rheumatologist would be in a position of being able to compare your results with others who have RA and also to establish a new 'norm' for you.
As for the mtx - I'm afraid that for many of us tiredness and upset stomach can often come with the territory. All I can say is that, in my experience, this wears off slightly (or you become used to it). Having said that, when I was working I used to take my mtx on a Thursday. I found that I could get through the day following the injection relatively ok but the day after that was a lot tougher. It made sense to time my injection so that I was at home on that day. Three weeks is still very early to be sure about long term effects so hang on in there for a little longer but perhaps make notes in a daily diary about your symptoms so that you can establish any pattern and discuss with your rheumatologist. x
I agree with everything already said. Mxt works very well for me although I am on tablets rather than injections. Not sure why you have been put straight onto injections - I thought they usually tried tabs first, then moved to injections if there were significant side effects as injectable Mxt is usually better tolerated - or you can get away with smaller doses. I think it took about 6 weeks for my symptoms to improve, and for 12 years I was virtually back to normal. I then developed liver probs - but that's another story! Good luck anyway and don't give up hope x
Thank you al, this has been a great help! it really does make you feel better knowing these experiences are not abnormal for the situation!!!
Hi Joeyrabbit,
I hope you've found this site useful so far, and hopefully you've also seen the information on our website nras.org.uk and just in case you want to talk to one of our Helpline team about any questions you have about RA, the number is 0800 298 7650. We also have groups around the UK and there may be one near you. You can find out more about these at nras.org.uk/groups .
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