Starting on steroids

[Jacqueb]

Hi I am newly diagnosed with rheumy and wondered if there is any alternatives to starting on steroids. For me the diagnosis has come very late as I've already had two hip replacements , and am having both knees replaced this year . Talk about closing the door after horse has bolted ! Any advice welcome .

[popsmith1874]

Go to the vet better care ha ha👍

[Jacqueb in reply to popsmith1874]

Very constructive and welcoming for my first post .

[Jacqueb in reply to popsmith1874]

I see you benefit from support for your posts , so why take the mock out of mine ?

[Jacqueb in reply to popsmith1874]

Have you read the forum guidelines ?

[hawker955 in reply to popsmith1874]

The commonest compliment we get is, " I wish that the NHS was as efficient as you are! Sorry to any doctors reading this but it is true! Test results often within a few hours, , x-ray results immediately and so on...

[popsmith1874]

Sorry if offended, it was a joke to cheer people up this morning

[Simba1992]

I do hope you find alternatives if the plan is longterm use. I have understood that sometimes no other option😕 If you are in a lot of pain I have understood medical marijuana is a safer option. LDN has also helped many with pain management. ldnresearchtrust.org. I hope you find something better. Good luck😊

[Jacqueb in reply to Simba1992]

Many thanks , I'll take a look

[Jacqueb in reply to Simba1992]

Many thanks for this , I took a look and I'll be investigating further and passing on to friends with some of the conditions. Thanks again ,Jacqueline

[hawker955]

Once the diagnosis is confirmed, you are likely to be put on non-steroidal anti-inflammatory drugs [ NSAIDs.] sulphasalazine/paracetamol, methotrexate and biologicals as the most potent treatment. Nearly all the meds for RA have side-effects but less serious than rheumatoid arthritis itself,. Personally I would not want steroids though.

HTH?

[Jacqueb in reply to hawker955]

Hi hawker955 , I have heard about biologicals but heard that they don't prescribe first off . I had steroid injections last year and at first they were great , but oh dear , about a month after I felt dreadful - infinitely worse than I started.

[hawker955 in reply to Jacqueb]

My understanding is that biologicals are now used as first-line treatment for confirmed RA despite their huge cost , because they are so effective that they reduce the cost to the NHS of rheumatoid cases in the long-run. Good luck.

[helixhelix in reply to hawker955]

You've said this before Hawker955, but I've yet to meet (virtually or for real) anyone who has had this experience. Have you? Suspiciously I wonder if this is just an NHS "guideline", but in real life rheumies don't suggest/offer it?

[hawker955 in reply to helixhelix]

Yes, I was offered it relatively early, before RA was the diagnosis. I started Humira when I was told that I had post-viral reactive arthritis that should have spontaneously cleared after 3-4 months but it didn't, and I was responding poorly to Naproxen/sulphasalazine etc. so the rheumatologist gave me Humira. It was my silver bullet and two weeks or so later I was at least 90% better.

[helixhelix in reply to hawker955]

That's great! Will give others hope that they too might get access.

[Jacqueb in reply to helixhelix]

That would certainly reflect the experience of some friends who've had it for years and only just been offered biolgicals now . I think it probably varies according to your CCG

[Paulajolo in reply to helixhelix]

You have to fail on 2 other drugs first to qualify for biological. THEN you have to ask for them on NHS.

[Jacqueb in reply to Paulajolo]

Thanks that's interesting and useful to know

[Shazz10]

Hi Jacqueb and welcome.

I'm recently diagnosed and am on steroids quite a high dose to start with, that has been tapered down and will be off them completely in another 6 weeks that's If the methotrexate that I am on works. I can't wait to be off them but they have been invaluable in dealing with the pain and getting me mobile again. So I am thankful for them in the short term at least. Apparently there are lots of meds that you can be prescribed and there may be a period of trial an error to get the right one for you. Best of luck with it all and you will find this place a great help there are lots of knowledgeable and supportive people here.

Sharon ☺

[Jacqueb in reply to Shazz10]

Thanks Sharon, that is very comforting. It seems bewildering the drug combos but at least this forum is a path through the forest!

[Jacqueb in reply to Shazz10]

Thanks Sharon and glad you are feeling better

Jacqueline

[popsmith1874]

It takes a while for them to get the right combination that's how this disease is so complicated everyone's different and sometimes it can take years to get the right combination

[Tara26186]

Hi am fairly newly diagnosed too and a lot to take in! I was given naproxen as well a steroids and I take naproxen mainly and just use the steroids if major flare up.

[helixhelix]

For the first year after diagnosis I had several periods using steroids. Mainly the jabs but a couple of short courses of the tablets too. If you stick to a reasonable dose, tapering down over a couple of weeks, then side effects & risks are low.

However, since then thankfully I've rarely needed them. So it is usually just an initial approach to help you cope, and that's your choice. It only the unlucky few that need to stay on them long term. Some people just stick to anti-inflammatories but they carry their own risks.

Were your knees & hips osteoarthritis? As getting an inflammatory arthritis on top just seems such rotten luck

[Jacqueb in reply to helixhelix]

Hi , yes knees and hips osteo ....it does seem bad luck .......

[chacha700]

steroids aren't good but a means to a end, as without them the good drugs are mare difficult for the human system to sink with. I've been on them a year and I've been weaning off over quite a few months now, im 4 stone heavier and down to 1mg. but they have helped with all the flair ups. I cant wait to see what my life will be like without them. im quite optimistic. I've lost 10 pound so far weaning off and had one panic attack. my blood count and pain score are so much lower than when I started with RA. . SO GOOD LUCK AND DONT BE PUT OFF. GO WITH YOUR GUT FEELING.

[Jacqueb in reply to chacha700]

Thanks , glad they got you through a rough patch .

[FionaHerts]

Hi Jacqueb

Welcome to this group. I was diagnosed in September last year and have found so much help and advice on this forum, especially in preparing for Rheumatology appointments and know what to ask and what treatment options are available.

When I was first diagnosed it was a shock and I was so upset I didn't really ask many questions. Your Rheumatologist will be able to tell you what the plan is for your treatment and why they are advising steroids. That will depend on many factors, including what sort of Rheumatoid disease you have, so you'll find members on this forum on all different drugs.

Sometimes oral steroids are given for a short time to reduce severe inflammation and pain, I've had that and they work wonders (miracle! all inflammation gone and could walk again!). I know others are on a low dose for longer periods taken alongside a DMARD (disease modifying anti rheumatic drug) which work to dampen down the Rheumatoid disease.

I've also had intramuscular muscular (into the bottom muscle) steroid injections which are much less potent, but can take the edge off the inflammation and pain. Often these are given as an interim measure, as in my case, to help while a DMARD starts working, up to 12 weeks.

If you do start on oral steroids, please ask about what you can take to protect your stomach, usually a stomach acid reducing medication is prescribed. Also ask about Vitamin D and calcium supplements. I had a 40mg dose of Prednisone for 3 weeks, then another 3 weeks weaning off and was told supplements weren't needed unless I was on steroids for 6 months. But I ended up with Vit D deficiency (down to 17!) which caused muscle pains, you certainly don't need that on top of Rheumatoid problems! Also important with your OA I'd think.

Hopefully you'll be seeing your consultant soon to discuss all this. If not, and you already have your steroid prescription but can't decide whether to take it, I'd suggest phoning the Rheumatology Nurse at the hospital. For me that's often been the best route to more information. Sometimes the nurse can get a Rheumatology doctor to phone you so you can discuss, which I've found very helpful.

The NRAS phoneline is very good for information and support too, or just to talk it over.

Best wishes.

[Jacqueb in reply to FionaHerts]

Thanks that's really helpfu to hear . And yes I'll see the nurse , the consultants are all in so much of a hurry !

[Nettac]

Heyup

I've had several intramuscular steroid shots, and I've got to say I was so grateful! Where the steroid shots you've had before into a joint, or in the backside?

I had some wobbly mood issues on the steroids but it was better than agonising pain. I'm now on leflunomide and just have a shot if there's a flare. I'm fairly newly diagnosed, so meds still a bit in the air, but overall things much improved!

[Jacqueb in reply to Nettac]

They were in the joint .

[saskia15 in reply to Nettac]

Hello I have only been diagnosed two and a half years. I have been on Streroid injections for flare ups and Sulfasalazine for a few months then on to Methotrexate. Both of these caused me Palpatations ,Diarorrhea and other problems. I have just started on Leflunomide and have had mild tummy problems. I will stay on them as long as I can. I Would like to stay in touch with you and see how we fair on this medication.

[glenb in reply to saskia15]

Try slippery elm supplements and acidophilus probiotics. Get some good doses of both in your system. Works for me

[FionaHerts]

Ive always had steroid injections into my bottom to help with an all over flare. I think there are different strengths the Rheumy can give. They've always helped me, but less so if the flare is really bad.

From what I've been told (at my DEXA scan) they don't lead to the same sort of problems as oral steroids.

I had lots of side effects on 40mg Prednisone and came off as soon as I could, but a previous one week course at half that dose last year was good and worked miracles.

Good to hear you are doing well on Lefluomide Nettac. I'm starting to settle down on Methotrexate, just need to get my achillies tendons sorted!

[Jacqueb]

That's interesting to know - about the oral steroids , thanks .good hours was a positive experience ,

Jacqueline

[Nettac in reply to Jacqueb]

I've not had much problem on IM steroids at all. I think folks have a harder time on the tablets. Can you ask for IM shots? Or does it have to be tablets?

[Jacqueb in reply to Nettac]

Not sure yet, will ask tho

[HallJackie123]

I refused oral steroids. It wasn't easy, but I conclude I would take them if it was absolutely the only way to cope or it was a matter of life or death.