Advice re waiting game, nodules and pain please. - NRAS

NRAS
26,486 members30,390 posts

Advice re waiting game, nodules and pain please.

Hidden
Hidden
16 Replies

I am back again with more questions -sorry! A week ago, a few days after the Kenalog jag, nodules started arriving on my finger joints. This unhinged me a bit I confess! Had a bad week of thinking about how to quit it all and then my husband phoned our GP and had a long chat. After that things have become more bearable. Still no date from hospital re my first apt with consultant next month and I'm finding that, although the Kenalog seems to have stopped the stiffness and swelling (heat) my fingers and wrists are much more painful than I can cope with. I end up shaking them about in attempt to rid myself of the constant ache and sharp pains that come and go constantly. Standard killers don't appear to make much of a dent really.

Every finger now has a nodule and I find myself worrying horribly about the future when I'm put on DMARDs and all the side effects. Most of all hair loss I read about with some, MTX especially, because I've had allopecia twice, once as a child and once after third baby and fear that losing my much cherished hair will just about finish me off? Can you wonderful people help with any advice to cheer on any of these fronts I wonder? noduled and achey fingers tightly crossed!

16 Replies
oldestnewest
Hidden
Hidden

oops meant to write standard painkillers (not killers) that my GP has recommended!

Reply
Hidden
Hidden

Hi Tilda, sorry about the nodules they are unsightly and painful I have them too they are normally caused by the RA being so aggressive not many people get them. Andrea put a question on only last week so you may wish to look at some of those answers too.

As you have got the nodules early on sometimes they go down once the RA get under control or they can give a steroid injection and even withdraw some of the fluid. If of course they are hard pea size nodules like mine there isn't much they can do. The reason I now is on my last consultants appointment i asked what he could do and was told that they don't like to do surgery as the incision is quite small and because it's in a joint that we bend a lot we are more open to infection, so he suggested to put up with them.There was however an option of being injected with a radioactive substance that helps kill them off! how? I don't now as I didn't like the sound of that anyway!

I know what you mean about shaking your hands, I also tend to find that the pain killers don't really work there either,sorry.

It is a rough ride a times I know but you will get sorted, eventually, it's all about finding the right treatment for you. I know it gets frustrating and terribly hard to live with at times but somehow you will find the strength from within, you have to.

Your hubby did a good thing speaking to your GP, if your still not coping do the same again it's the only way to be heard and to get things done sometimes. He is your best one for pain relief etc until you see the consultant.

Try not to worry, difficult I know, but worrying will only makes things worse has RA loves stress etc!

Yes the MTX does have a side effect of hair loss,sorry, but it's generally in higher doses. Please explain your fears to the consultant as he is the best one to give the correct advice when he puts you onto MTX,and explain to him about the hair loss in the past too.

Take care and good luck

Mandy xx

Reply
Hidden
Hidden

Thanks Mandy - worry does seem to be taking over my life rather so I know what you mean about trying to chill while I wait. I read Andrea's post and thought thank goodness i haven't got those at least - and then bingo - suddenly they are popping up like crazy! Whatever next? Actually I don't want to know that really. They aren't pea sized yet but my fingers are so painful that I'm probably more aware of them than they warrant yet. Hope they do go away but I'll just have to accept them if not. Perhaps I'll start making artworks about nodule/ hands soon as fingers will allow.

Reply
juliep

On a plus point i am on mtx (20mg) and i havent noticed any hairloss so i think it only affects some people. fingers crossed you arnt one of them. Jules x

Reply
Hidden
Hidden

I personally had no hair loss issues with methotrexate.. other problems but not hair loss.. hope I can reassure on hair loss problem.. not usually large amounts couple of hairs.. it is reversible on stopping/ reducing treatment dose and as mand says at higher doses comsultants start patients at either 5mg or 7.5mg These are small doses and as a general rule for most people dont cause too many problems...

Reply
Hidden
Hidden

can I recommend a wax bath for your hands?.. they sell them at argos.. very therapeutic.. there are blogs// links re this on the site somewere alison x

Reply
Hidden
Hidden
in reply to Hidden

Yes I agree, wax baths, lovely!!

Mandy

Reply
Hidden
Hidden

Thanks these comments are all quite cheering re hair loss! And someone else told me about wax baths but I didn't quite know what they were on about so will definitely order or buy when we are away soon - we don't have an Argos up here. J

Just worth mentioning re alleviation of symptoms - a month or so ago I had to fly to Edinburgh. I was really apprehensive because my feet, knees and wrists plus hands were all badly inflammed and very stiff. The plane was small and had a very powerful engine vibration. Instinctively I took of my sandals and placed my feet on the plane floor and my wrists and hands on the arm rests and had an amazing vibration massage for an hour. When I got off the plane it really felt as though all the symptoms had eased considerably. It was the second day of a doubled-to-max dose of Sulfasalzine though so maybe I'm attributing wrongly - has anyone else ever experienced this vibration therapy?

Reply
Gina_K

Tilda,

I also am on 20 mg methotrexate (& others), and no hair loss yet! but have lots of hair. Interesting about vibration, massage would prob be very good 'add on' for you!!

Good luck with finding right treatment it is out there you know. I had a huge nodule came up on my elbow in early days, god it was unsightly, thank goodness it receded and now you'd never know it was there! My aunt has them on her fingers and says when she lived in Canada, she used to have them injected and they disappeared but she says her doc won't do them here.

xxx Gina.

Reply
Hidden
Hidden

hard to say wether increased medication. or vibration or both.. may be blag a session in mates foot spa?? pleased we are being positive.. and as gina and i said we had no hair loss. of note.. argos do online but again prob dont cover scotland..? not aware of this fact being a southern english person.. there must be some one in scotland selling them.. they are used by beauty therapists for paraffin wax manicures too.. so maybe a beauty supplier??

Reply
Hidden
Hidden

Thanks both - trying to keep chin up high and stay positive and you guys are helping. There are a couple of Argos in Edinburgh and I think all over Scotland but we live on an island with no Argos. We will be driving down to Edinburgh in just over a week so will look out when we're there. I will also look online

Will mention to consultant about allopecia so they can take into account when deciding what meds to put me on next.

A bit sad I know but I'm even cheered that friends and an uncle have now looked up RA online and phoned me back in a state of shock. I think ignorance is half the battle with this disease and a problem shared really is a problem halved. It's a bit like bereavement (and I've had plenty of these in past few years) finding you have RA - but with loss of a loved one you can at least share the grieving process with others - this really felt as though I was on my own until I made myself get involved in HU and email NRAS helpline. Now friends and uncle are rallying round me more I feel less overwhelmed and lonely - and I've lost a stone and a half in six weeks without even trying which has to be a good thing as I was horribly overweight!

Reply
cathie

I've been worrying a little bit about the impact of talking a lot about our side effects and illness. Its hard to balance being frank about them and being reassuring. I wrote once about hair loss and mtx and want to say here that it was thinning rather than loss and that it really isnt a big thing. And I'm as vain as can be. I know (because I was once mis-directed to reduce the mtx) that it does help with the RA a great deal. And that we have to think about our overall health when making decisions about what not to take.

When I started on anti-TNFs about ten years ago the treatment was in its infancy and noone really knew about the long term impact. I was in such pain, my quality of life was so reduced that I wen for anything that would help. It was absolutely the right decision. Noone can guarantee anything in life, apart from the inevitable end of it, but people I know who seemed to be the healthiest have developed dreadful illnesses or just died, and other less health-conscious like me, have trundled along - so far so good.

Eight years ago I was in despair. I didnt know then that I would bounce back quite a lot (there's a horrible ache in my knee as I type which reminds me that its not gone away) and that I would move to a different country and find a lot of new friends and things to wonder at.

And Tilda, its great that your relatives have checked out RA and understand it better. Not feeling alone must help enormously.

PS. yes we have Argos in Edinburgh!! Most of the big (and happily little) shops. Just wish there was a Wagamama - there is in Glasgow.

Reply
Hidden
Hidden

Hi Cathie nice to hear from you down in Edinburgh where my hubby has just arrived at! He says it's warmer than Orkney but not much. That is cheering to hear about you have at least mainly "bounced back" - and that you are so enjoying being in Scotland. I don't think I'll miss not having a Wagamama because my brood can't stand the food - and Edinburgh is so stuffed with amazing World food cafes and restaraunts - the best city I know for food and that's something coming from a born and bred Londoner like me!

I went to another GP today for a routine smear test as mine is away for 2 weeks. It was a bit of a pretext because you can see any of the 3 in the practice and this one is particularly on my wave length but I didn't want to offend my usual guy because he's been very good too. Although I expected some reference to the RA while I was on the couch, I didn't expect a 40 minute session with her - it seems she'd seen my name and he'd told her to keep an eye on me for depression etc - and so she had put me in for 3 appointment slots? She told me to stop fretting about the huge queue for her outside in the waiting room! Not quite sure what to make of this - perhaps they reckoned I was losing plot - except that she's someone I've known socially a bit for years too - or perhaps she just wanted to take the load off the other chap because I've been so demanding?!

Anyway she phoned the hospital to check i was booked in to July clinic and then asked me what frightened me most of all about RA. So I showed her my hands and told her about the nature of my work - very detailed embroidery from morning until night. And she has decided that I should get my hands x rayed tomorrow as she hopes that will put my mind at rest that the disease hasn't damaged the DIP joints yet. She also checked out mtx for hair loss and said same thing as all of you re thinning rather than all out allopecia and was very understanding about my anxieties about this also. So little joints all crossed that I'm still in early stages as both GPs think, and if any damage already done then at least the consultant will be able to see it in July.

Reply
Hidden
Hidden

pleased that lovely gp really helped you and that you found a great scottish lady/ friend in cathie too

Alison x

Reply
alison-r

hi, have just joined site. I take 20mg of mtx once a week. Consultant prescribed taking folic acid every day except the day I take mtx to combat hair loss effect. Seems to be working.

Reply
Hidden
Hidden

Thanks for getting in touch with me and telling me that Alison - I'm pretty new to the site too. Yes others have been saying that folic acid helps to counteract the effects of DMARDs such as MTX so if, when I finally do get to see the consultant, in three weeks time, I get prescribed MTX, as my GP thinks likely - I will ask for folic acid too.

I had a hands and wrists xray yesterday but unfortunately it was a very young student chap who had to be corrected a lot by another young lass - afterwards he to me that I had to wait ten working days for the results - by which time I'll be away for work for a week. Both my GPs are off on holiday now and I spoke to Xray dept and the radiographer told me she would do her best to fast track for next week but all slow just now because... yes you guessed it ..everyone's on holiday?! Hey wish my RA was on holiday - hands and feet are all shouting just now and I'm maxed out on painkillers!

Reply

You may also like...