steroids working well

[Phoo2]

Can't believe how much I got done today....cleared garage, cleaned bathroom, hoovered......literally more than I have done in last 3 months combined!!!!! Woohoo for steroids.!!......just hope I can sleep tonight😃

[Fruitandnutcase]

I know, when I had mine I felt like a cross between Supergirl and Wonder Woman. It was absolutely amazing not to be in pain and to have so much energy. Think I slept ok too.

[Em13]

I have an appointment with my rheumatologist tomorrow and you are making me think that I should accept the steroids if he offers me them again! After almost a year, and two DMARDs later, I'm fed up with sitting around waiting to feel better. Widespread aching tendons or muscles have put a stop to me doing anything physical for so long and Ibuprofen, Paracetamol, Cocodamol and Diclofenac don't seem to alleviate my achiness. Nor do Depo shots. But I break up from work tomorrow and over the next three weeks have three ceilings I want to paint, a house clearance to do and a large garden to tidy, as well as other stuff, so I need a break from feeling crap.

My inflammatory markers are both within the normal range and I don't really have joint issues, so I suspect that the rheumatologist will not believe that I feel so rough.

Steroids (well, the side effects) scare me though, so I might just ask him what the "natural steroids" are that he warned me against.

[Phoo2 in reply to Em13]

Gosh that's hard...... It s so annoying just waiting for the meds to take effect (if you are lucky enough that they do) maybe some steroids would help over Xmas.......my tablets took almost 2 weeks to kick in tho.........

What is the long term plan ...are they going to start you on a biologic if the dmards aren't working?? Life is hard enough without being in pain......

[Phoo2 in reply to Phoo2]

Good luck with all the house stuff......can you get help? It sounds as tho u need it...

[Em13 in reply to Phoo2]

It's hard to say really. I suspect that the rheumatologist will say the SSZ is working. It should have become effective by now, but I feel worse. But as I don't have fatigue, swelling, morning stiffness etc, just widespread achiness, and nothing showing up in my blood, I don't think he'll be interested. I'm not really in pain - not on pain killers - but it just gets me down that I cannot do anything physical without triggering widespread discomfort to my muscles and tendons! Luckily, I have a desk job so work isn't a problem and I haven't taken any time off since my diagnosis in January.

I don't want methotrexate, which I think is the next unavoidable step, so I'm stuck. No point in steroids if they don't kick in immediately as by the time they do, I'd nearly be back at work, and in the meantime, I'd be risking the side effects. There has got to be some other solution!

[Phoo2 in reply to Em13]

That's tough, coz even if you don't have 'markers ' of disease you are not feeling well........I remember my consultant kept saying I was in remission even though I was in on/off pain and had swollen joints which affected every day life.... That's remission is it??!!!

Methotrexate is nasty but maybe try it........if it doesn't work for you, at least you will know......I tried it and couldn't take the side effects.......so know how nasty it is........hang on in there

[Em13 in reply to Phoo2]

Aah, well. No offer of steroids tonight anyway.

He did offer me some amitrippy-something, but I don't want to regularly take more drugs for a bit of aching. He kind of hinted that it may not be actual RD causing this, and advised me to try capsaicin cream. My husband is going to love this. Bad enough that I am liberally perfumed with frankincense, wintergreen oil and Tiger Balm, now red pepper as well.

I'm not really sure what remission is. He did say tonight that remission is the goal and we are very close, but not quite there because I have inflammation in my little finger. Very bizarre, as I'm further from being symptom-free now than I was when I first started seeing him. He is very focused on my joints and wanting to squeeze and prod and bend and query bits of me that don't hurt, but things that drive me half-crazy he's not concerned about.

So for the minute, I'm to add another Sulfasalazine tablet to my daily rations. Let's hope my expectations of it are exceeded!

[Phoo2 in reply to Em13]

Ha ha I know I use some herbal plasters and other lotions- all very attractive and myself and my partner are trying to conceive!!! And I agree they seem to be very interested in swollen joint count but that general 'malaise/feeling unwell' doesn't seem to factor....... Good luck with the the sulphazine - I think it is one of the more gentler ones (well u can take it in pregnancy I have been told).....

[Em13 in reply to Phoo2]

Well, inspired by the Romans, my husband did offer to whip me with stinging nettles to see if that helped!

Hope you soon conceive and that your RD goes into remission with your pregnancy.

I wonder why thy have never isolated the hormonal balance that makes this remission possible and used it as a basis for an RD drug therapy? I did try natural progesterone to relieve my aches, but all it did was stimulate periods.

[Phoo2 in reply to Em13]

That is such a good point.....why aren't they investigating that????? Is it something simple like a hormone imbalance??? Surely it can't be that simple??? Or can it?

Have u heard about vagus nerve electrical implant?? Amazing results....

[Em13 in reply to Phoo2]

I'll look into that. I have come across vagus nerve stimulation, but never by implant.

Hormones must come into it for at least some of us. For me, I'm sure stress hormones played a triggering role. But I think the balance of my female hormones was changing around the same time.

[Hidden]

Hello. So glad you feel better!

May I ask if you are taking tablets, or if you've had a depot? I only ask because I had a depot a month ago and it seems to have worn off😟

Don't overdo it!

[Phoo2]

I had an injection and that did precious little. I am on tablets now. 20mg for 2 weeks and then reducing to 15mg after another 2 weeks and then 10 mg holding dose......the tablets take longer to take effect but are stronger I was told.... It's been a god send as I have been in agony on and off for 6 months..........now waiting for cimzia......hope that works................

[Fruitandnutcase]

I opted for tablets rather than the injection I was offered when I started on steroids. The dose reduced over a period of theee months until I stopped them completely. I felt relief immediately.

Before that as wwell Ely as the hand pain and being unable to use them I used to be really stiff in the morning and generally I felt like a bus had run me over then reversed back over me just for luck. I had terrible burning pain right down my neck and shoulders - all the time. Fortunately that never came back. I started in hydroxychloroquine when it was obvious that the steroids were working. I mistakenly thought I had to finish the steroids before I started the HCQ but fortunately the letter to my doctor arrived and I realised I should have started the HCQ as soon as I noticed an improvement. The HCQ takes ages to kick in then you realise that it has.

Only downside was the steroids gave me steroid induced T2 Diabetes. I worked hard on my diet and exercise and that's gone now. Was warned about the effects of HCQ on my eyes etc but nothing was said about the steroids giving me diabetes and yet it is well known as a side effect.

[stbernhard]

I'm very pleased for you. My first steroid shots 7 years ago were like a gift from angels. Now is a very good time to learn to pace yourself. Have a lovely pain free Christmas.

[Poppygail]

I would just like to suggest that you be careful about "overdoing" when the steroids first kick in. My wife, a longtime RA sufferer, will only take steroids when she feels she absolutely must and then when she feels so much better in the next day or so she goes at life like a dynamo. She wants to get everything she possibly can done while she feels better. The problem is she always pays for pressing her body farther and faster than it should have been for days or weeks afterwards. It seems she has an exhilaration to feel better that she almost can't control her desire to get everything done that she can while she feels like it.

But like in most other aspects of life, moderation is the key. If she can reign in her enthusiasm a tad and do just a little less, she feels much better for a longer period of time.

Just my observations from years of living with an RA sufferer, hope it helps.

[Phoo2 in reply to Poppygail]

Very true, thanks for your words.....my right arm is very sore today probably from having over done it yesterday(in sheere excitement!!) so I am taking it easy and moderation is key as you say..........