Hi everyone, well finally the steroid injection I had on 25th July has worn off completely :(( The last few weeks I've been getting grumbly joints but last week I realised that it must have stopped working altogether. Still it's done me pretty well. The bad bit is because you feel so much better when you have an injection you forget how bad it is without it. You also forget that you need to pace yourself and I'm suffering now badly for forgetting this over the weekend!!
I didn't go too mad at the weekend, a little shopping and dinner out for my husbands birthday, but my symptoms are back with a vengeance. My wrists feel dreadful and I'm struggling to use my laptop for work. I'm soooo tired I feel ill. My ankles and knees are more affected than I remember before and I don't want to risk walking the dog as I'm scared it will aggravate them further. My elbow's not good and I'm back having to take codeine. I'm lucky that I can work from home so only the dog has to put up with my moaning ha ha!! I started mtx mid August, it's clearly not working yet but I know it's still very early days for this and I have to be patient.
My rheumy gave me a steroid injection for my Gp to give me if I needed it before my next appointment back with him. I'm not too sure whether or not to have it though. I do feel dreadful, but then I have RA which isn't yet under control. I'm lucky in that my RA isn't very aggressive but I still feel pretty grim. I'm still taking Celebrex too and didn't manage to stop this even after the injection. My view has been to try and keep the steroid injections for when I really need them. Times like over the summer holidays etc. I know that if you have them regularly they become less effective and I don't know what to do ... any advice please?? From a feeling sad Rosie x
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Sorry to hear you are feeling so low. The steroid injections are great when they work but sadly they are not always effective. I find that oral steroids work better if needed. I think Methotrexate can take at least a month to kick in of not up to 3. Is it worth speaking to your rheumy about a course of oral steroids to see you through? I know they are not nice to take but a short course is generally considered to be ok. Good luck and I hope you feel better soon.
Thanks Janeye, I think we were replying to each others woes at the same time!! I have had experience of oral steroids before and I suffered really bad rebound when I stopped taking them so I would probably only use these as a last resort. Hope your day is getting better though, Rx
How strange we replying to each other. I've had the bad reaction too as I had to come off them quicker than I generally should have for my surgery. I hope things ease for you soon x
Yes it felt like we were real kindred spirits ... anyway, I think I've decided that the answer to my woes is chocolate, so I'm heading for the fridge right now!!!
i had my appt with my rhumy consultant this morning,,because of severe reactions to mtx and salsavazine, he duly gave me another steroid inj ( had my last one in july), the pains in ankles and wrists are just starting to take hold slightly again, thats the 4th steroid inj this year, so would take it if offered,,,He has given me another prescription for some other tablets, sadly cannot read his writing but i,m sure he mentioned malaria in the conversation,,bless him he is a fast talker, so here,s hoping i have no re-action to this batch of tablets,,,
Thanks Chrissie and I hope the steroids work well for you. Hydroxychloriquine is an anti-malarial drug which is also used as a dmard so maybe that's what he's put you on. Have you found that the more injections you have they are less effective and don't last as long??
I'm in two minds also lol but with me being a coward and the last one didn't work, I'm in agony with my shoulders but having the steroid isn't quite as easy as it sounds lol. Bent of luck with your choice
Hi Rosie, when I was first diagnosed(July 2012), I was put on oral steroids, it took about 2 weeks to really kick in. I was given these while the MTX and Hydroxy kicked in. Since then I have had an injection in my wrist when it was really sore and I was experiencing a flare due to an on-going tooth infection, this didn't really work and a few weeks later was given a bigger dose that was injected into my rear. When I was given the second injection I think I was kind of coming out of the flare anyway. My Rheumy gave me the choice but thought it would be best if I had it. I only really had the steroid so I could get back to work, if I didn't have to work I may have just decided to ride it out. I guess i'm still new and others may have better advice but if I was really struggling to a point where I couldn't do things, I would have the steroid un less it gave me horrible side effects.
It took about 3 months for my other meds to kick in but my rheumy gradually reduced my oral steroids over that time. Also I found the tablets more effective but the injection more convenient - although I couldn't sit on my bum for the rest of the day. Lol!!
Hi Rosie, I've had both, the injections and tablets. Still currently taking the tablets (low dose) as I don't think Cimzia is up to full speed yet.
When I had the injections they worked a breeze to start with but eventually began to lose there effectiveness. If you haven't had that many injections maybe it might be worth going for another one just to help you through this.
Hope you start to feel better.....big hugs xx
I would take the steroid cover until your DMARD starts to kick in - my acid test would be 'is it making you miserable?' if so [and it sounds like it is] then there's no need to suffer unnecessarily. The steroids will stop the inflammation from getting out of control and damaging your joints whilst the DMARD gets up to speed.
Longer term you won't need them except for flares - but for now it's what is needed. I was also told not to let the flaring go on too long as it becomes harder to get it under control.
Thanks so much everyone for sharing your experiences, and Cece that is such sensible sound advice thank you. I've only had 1 steroid injection so far, the dmards aren't working yet and yes it is making me miserable. Sounds like a no brainer really when I think about it like that ... The chocolate was nice though ha ha!! Rx
You got that right Cece, I had the choccie and I've just managed to book an appointment on line with my GP for 9.30 tomorrow for the steroids, thank you you're straight talking really helped me decide xx
Hi Rosie-rabbit,,,re injections, so far they still work there magic,,its the tablets that worry me,,i suffer with copd so some tablets won,t suit me,,but my rhumy still gave me them,,lol,,thought the mtx was going to finish me of,,so fingers crossed these hydroxy work,,,if not i,ll just give in gracefully and suffer in silence,,,now where is my bar of galaxy,,,,
Hi Rosie - I've just been offered a steroid jab too. I have decided against because for me I don't like masking things and have a high pain threshold. But as Cece rightly says if the pain is getting you down then have the jab while you wait for MTX to work it's magic. It took six months for me to stop flaring with MTX and then only after Hydroxy was introduced. I might well now be cutting off my nose to spite my face but as I've just started an anti-depressant which is at least helping me sleep better - I'm scared that steroids in any form might disrupt my sleep pattern once more. I had a Kenalog injection 2 and half years ago when RA first took hold and it did make a big difference to me but my mood changes the first week after the injection were scary and I don't need this just now. I will take Prednisolone if and when things get unbearable because at least I know I can wean off this in time for my rheumy to see me at my worst in November! But that's just me and I inhabit a world where rheumy service is so inaccessible and scant and I have to plan ahead so that I have some swollen hot joints to serve up to him or else I fear I'll be left for another year without meds! Tilda x
Hey Tilda, it is a hard decision isn't it, knowing what to do for the best. You have so many other drug issues I'm not surprised you've decided to avoid it.
I saw my GP this morning and after alot of confusion he agreed to give me the injection.
I have to say though now I've had it I feel that someone's poured WD40 into me!! It has also made me realise how extensive the pain had become. I thought some of the aches and pains were not RA and just overdoing stuff and getting muscles aches. The relief I've got everywhere, especially in my neck and back is slightly worrying!! The steroid hasn't completely kicked I'm yet but is getting there. I've upped my mtx and just gotta hope it soon starts to work. I hope things pick up for you soon Tilda, take care Rosie x
I'm so glad for you Rosie! I must admit that I've had moments today (when I woke up struggling to move for pain everywhere) when I've been tempted just to go and get one as there would be no issues with me as its at rheumy's suggestion. But I'm trying to hold firm. But thanks for reminding me its an option if things get too bad. X
I'm glad you're thinking of your options but sorry your in pain Tilda. Mine was also on rheumys suggestion too, he even gave me a vial to give to my GP if I needed it. My GP said I couldn't have more than 1 every 3 months and he read out to me the rheumy letter saying that he had given me a 3 month dose. I got him to look at the letter again and pointed out it said a 3ml vial not 3 months, he apologised for his mistake and promptly gave me the dose!!!
It got worse, sorry I'm starting to rant now but it was farcical, I said to him that on a good point the increase he had made in my folic acid had helped my nausea, to which he replied 'you're taking 2 now aren't you?' Me 'no 6, 1 every day but mtx day' dr 'really!!' 'Yes' I say, 'it's what you prescribed me', dr 'did I, well that's way too much you need to reduce that down to 2!!!' I've looked into this and if you take it every day your meant to have a low dose or at a higher dose a maximum of 2 x 5mgs a week or it can stop the mtx working, I was taking 6 x 5mg a week!! My faith in my GP has plummeted done what, still at least he finally agreed to the steroid I was gutted when he first said no after agonising over the decision. Rant over!! Rx
Oh dear - I really don't think GPs know too much about these meds you know. Mine prescribed me one folic (5mcg) per week initially but then, I was so paranoid about hairloss and my mood swings the day after mtx that I asked him if I could have more please. He frowned and refused saying he couldn't see how more would help with side effects. Then my rheumy sent a message via physio to say that as I was feeling so unwell after MTX I should up my folic to 3 per week (he didn't give a dosage). So I upped it of my own accord and then got a note from the pharmacy saying this needed reviewing. By this time I was on Hydroxy as well and had switched to injections, all through my rheumy although my GP practice were the ones prescribing. Then I saw another rheumy in January and asked about folic and he said take four a week and he would put this on my notes as I was still suffering nausea. Finally, since I've been having the horrible time with peripheral neuropathy, I learned through someone on the Thyroid UK HU that folic acid taken over 1mcg per week can mask B12 deficiency - which my results were fine for. I asked my rheumy about this and he agreed that this was a risk of taking folic acid but felt that at my very healthy B12 result this would be unlikely to be the cause of the pins and needles plus numbness.
I still felt unsure so I checked this with my GP, who is quite knowledgable about all things rheumy compared to most GPs - but he knew absolutely nothing about the folic masking the B12 significantly or even a little and was very dismissive. I tell you all this so as you, and others are aware that high doses of folic should be fine but can definitely significantly alter B12 results and therefore mask Pernicious Anemia (PA is an autoimmune condition too). I found this on an NHS minerals and vitamins link someone on here posted and its clear as daylight. My GP has refused to check my vitamin D, folate or my T3 - all of which might account for for current low level joint pain and pins and needles. So although I like my GPs I don't always think they are any where near right!
And I know I could get a steroid injection because I haven't had one for 2 and half years (Prednisolone more recently) so I have decided that I call the shots not my GP on this! Having read your tale of today I feel doubly sure of this! X
PS and I was only ever prescribed 5mcg tablets at rheumy's suggestion - I am sure that when people say they take six a week that they mean 30mcg not a lesser amount but worth asking as a question perhaps?
Yes I might do Tilda thank you. Crumbs you do go through it don't you. My info about doses came from nras helpline and was read off their mtx info sheet. They did definitely say though that too much folic acid could stop the mtx working so getting the dose right is really important . Although taking too much is unlikely to directly harm you, if it stops the mtx working then it could indirectly cause problems.
It's all a bit of a mine field between gps and rheumys. I'm glad I'm not the shy retiring type ha ha!! Rx
Poor shy retiring types eh? Mind you I think sometimes that my GPs rely on patients like us to keep them right so maybe they put more effort into looking after the shy retiring types? X
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