Hello all, newly diagnosed...I just wondered if anyone has had Methylprednisolone injections?

[pamsim]

Hi. I’ve been reading posts on the forum for a while but this is the first time I’ve posted. My problems started in December with knee pains, then feet and now my hands are so painful. Visits to my GP were unsuccessful as my blood tests didn’t show inflammation and he wouldn’t refer me to a specialist. On my last visit ( April) I insisted he referred me and my appointment came through for 14th August. In despair three weeks ago I asked for a private referral who said I was a classic R A case, pain stiffness particularly on a morning, swelling etc. Anyway, he wants to begin medication but I’m flying to America on holiday on 5th July. I’ve decided ( rightly or wrongly ) to delay starting until I come back, I was worried about side effects and no medical support while there. The specialist ( who after the consultation accepted me on the NHS) said he could give me a steroid shot into the muscle to help relieve the pain while I was on holiday. I have high blood pressure and I’ve frightened myself to death reading about side effects. Has anyone had these injections that could give me any advice. The other alternative is just to have my hands injected as at the moment my right hand is extremely painful and I cannot straighten my fingers. Thank you so much in advance for any replies. At the beginning of Dec I was fit and healthy, it takes some getting your head around:/

[pamsim]

Actually as a footnote the specialist actually just said steroid injection into the muscle, I’ve added the Methylprednisolone myself after reading about steroids but I’m not sure that’s what it would be.

Thank you

[Hidden in reply to pamsim]

When I had Methylpred (for Vasculitis) it was a full gram administered in an hour and a half infusion. I had 5 all together. This was alongside 40mg Prednisolone tablets daily.

[Izzyowl]

Hello Pamsin, I did the same as you and saw a Private Consultant first. My RA came on very quickly too with fingers and wrists swelling up and also pains in my ribs which I didn't know was related at the time. This Consultant recognised the symptoms as being some form of inflammatory arthritis and he got me started on Hydroxychloroquine and Naproxen. He also injected a finger which had blown up like a sausage and that gave immediate relief. He then wrote my referral letter to an NHS Consultant. Finally when my NHS appointment came through, I had all the tests and then got started on Methotrexate under close monitoring. I was also given a Methylprednisone injection which helped settle things down until the Methotrexate started to work. So in essence I was grateful for the things that were initially actioned by the Private consultant as they kept me going while I waited for my NHS appointment. I can understand your concerns about going abroad. I hope eventually you feel confident with the decision you make alongside your Consultant, about what treatment to take before hand.

[helixhelix]

If the consultant knows about your high blood pressure and was unconcerned then he has presumably assessed you as suitable for steroids.

Generally it is methylprednisone (depo medrol) or triamconolone (kenalog) that is used for injections. I have had both from time to time over the years and appreciate them greatly. My greatest problem with them is forgetting that I am not really wonderwoman and doing too much afterwards as I feel so great. Sometimes I have a sleepless night after the injection, but not always. I am on blood pressure medication as well as all the RA drugs. I have also had injections into joints, which are a bit "ouch"y but also work well for me.

I can't touch oral steroids as they make me go loopy, but injections and perfusions are fine for me.

[pamsim]

Hi , thank you both for your replies.

Izzy in my case the consultant is both private and NHS so the switch was straightforward, he said I should have been referred weeks before on the NHS so he was quite supportive. Thanks for your reassurance our initial cases sound similar.

Helix thank you for your reassurance about the steroid injection, I’ve read lots of positive comments like yours from people but then I’ve read about the possible side effects and initially talked myself out of them. However I think it’s slowly dawning on me that this isn’t going away and although my knees and feet are painful my hands are driving me mad as they are limiting so much what I can do. I think I’m probably ready to give anything that helps in the short term a go until I start on appropriate meds. I have an appointment next Thursday so I’ll take it from there.

Thank you both again and I hope you are both keeping well x

[jane1964]

Hello I have had two steroid injections while waiting for my other treatment for a different autoimmune disease vasculitis/ sjogrens which caused muscle pain tendon pain swollen fingers and many other symptoms.The steroids have helped me and only after I had them did I realize how bad I had been I know there are side effects especially long term and they are only a temporary measure but I am glad I had them I felt better not completely but more normal than I had in years.For me it was worth doing.Now I am on hydroxy chloroquine and starting Azathioprine but it's too soon to say if they're working.

[charisma]

Hi Pamsin, The guidance on RA, in order to prevent permanent damage eg erosion of bones, is urgently start aggressive treatment within three months of first symptoms appearing. If you go ahead with the trip, very good insurance is needed. Otherwise you might face hefty bills for treatment there, very very expensive. This is serious, especially if testing positive for anti-CCP as well as high RF etc.

I did not return to the USA (I lived there but came home just before diagnosis) until the disease was ‘stabilised’.

It is your decision to make though.

[Hidden]

Hello and welcome

I've had several depot steroids. Recently had one (at my request) so I could enjoy holiday. It doesn't get rid of all symptoms for me, but drastically reduces the pain and swelling. I've had no problems from steroid shots.

If you are really stiff and in pain, it might be worth you having one before you go away.

[AgedCrone]

I can't give you advice, but I've had RA for 20 years & I have high BP....in the past I have had Depomedrone injections into my thigh whilst waiting to start a new Dmard.

For me they were very successful........& lasted at least 8 weeks, but from what I read on here they don't always work......& you won't know if they will work for you until you try.

Do ask whoever prescribes your BP meds what they think.....but presumably your rheumy knows your medical history so wouldn't suggest the injection if he had any doubts?

Also.....Do declare your RA on your travel insurance policy......whether you have a steroid shot or not. If you have any other health problem & need to use the insurance & RA has not been declared you would be on dodgy ground & health care in USA is expensive.

Hope you get everything sorted & have a wonderful holiday!

[MezzyD]

I have found the injections really work but also found i end up doing too much as they have worked so well and i end up feeling realy great and unstoppable.

When you feel so rough and in pain all the time you forget how poorly you actually feel until you dont but i know you cant have too many of them and havent had one for a while since i started infusions.

[dbestdeb]

I am in the US. The rheumatologist I used to see gave me these shots every 2.5 months. They helped a lot. New rheumatologist said no. Steroids for emergencies only. Don’t be afraid. I noticed no I’ll effects except a little sleeplessness the first few nights after.

[Hidden in reply to dbestdeb]

One of the side-effects of taking a steroid medicine in the long term is that it can increase your risk of developing 'thinning' of the bones (osteoporosis). This leaflet explores measures that can be taken to stop this occurring.

If osteoporosis is thought to be due in part to taking a steroid medicine, it is known as steroid-induced osteoporosis. The use of steroid medicines is one of the leading causes of osteoporosis. Between 3 and 5 in 10 people who take steroid medicines in the long term will develop a fragility fracture because of osteoporosis if nothing is done to prevent this.

patient.info/health/osteopo...

[dbestdeb in reply to Hidden]

Yes, this and other effects is why she said emergencies only. They aren’t good for you for the long term. Just for a once in a while emergency.

[pamsim]

Thank you all for your replies, I’m feeling reassured I’ve found this site so helpful at a very scary/confusing time.I know everyone is different,but on the whole, results from the steroid injections seem positive. I’m the type of person who hates taking paracetamol so I can see I’m going to have to change my mindset reading about everyone’s experiences. The rheumatologist did say that if I’d been sitting in the chair fifteen years ago, he wouldn’t be offering me anything but pain management so I’m grateful that there may be options to help to control the disease. Best wishes to everyone and take care, I’ll let you know what happens and how it goes :/

[BlightyFiveStar]

Hi and sorry to hear about your situation. I had same issue as you as was diagnosed 2 weeks before due to fly to US on family holiday so hospital would not let me start methotrexate and then leave country in case I had a bad reaction. So in the meantime I had 2 steroid injections (1 in arm then a week or so later in buttock as first had no effect). I also had to take steroid pills with me to use if swelling etc got worse while away- which it did, so I did. In my case the steroids had no effect so were not helpful, and made me very weepy which was difficult for my kids on holiday. At this point I was in so much pain and feeling so ill and scared that I just wanted to get back and start treatment (I didn’t say that to the children though!). Like you I could not straighten my hands at that point and was using a disability scooter on holiday as everything hurt and I was very stiff. I also had a steroid infusion (drip) at some point after the holiday which also had no noticeable effect. But who knows how I would have been without it?

This is only my experience and for many people apparently steroid injections give amazing and rapid relief - unfortunately not for me though. In terms of worrying about side effects I would ask the hospital and be specific that you have high BP. I wasn’t keen to take them either but in the early days the priority has to be to reduce inflammation and limit the chance of permanent damage to joints. This is why steroids are used as a temporary measure before the slower acting disease modifying drugs can work. Good luck and I really relate to your situation. It is so much to get your head around at the outset and overwhelming especially when you have to delay starting treatment. Hang in there and do use the patient line at the hospital which most rheumatology departments seem to have, that is what they are there for especially when you are newly diagnosed.

[Magymay]

Hi it's such a lot to take in when your newly diagnosed I have Psoriatic arthritis (PSA)and it effects my joints and muscles .Similar to RA I'm on Methotrexate injections weekly but still have to take pain relief ,I do have to get a steroid injection sometimes to tide me over ,hope you get meds sorted and get used to managing it ,enjoy holiday 😁

[EDee]

Hi. I’m on a similar time line to you. First signs of inflammation started in December and worsened until in the new year everything hurt, knees ankles, toes, hands, wrist, elbows etc. Pushed my GP for a referral and was lucky to see nhs consultant mid Feb who thought it was reactive ra and gave me a steroid in my butt and arranged for me to go back in 3 months. The steroid worked after about 5 days I was almost back to normal unfortunately I was called back within 4 weeks to be told I had sero positive Ra. I have been on methotrexate since mid March had to come off for a couple of weeks due to raised liver, had another steroid which has given relief. I am now waiting to start methotrexate injections due to nausea. Sorry for the long post but I just felt it might help to know, I’ve continued to work full time, been on two holidays abroad and going sailing in September (that will be interesting but I won’t have far to wal)I have good and bad days (lots of tears) but refuse to stop living my life. I’ve found by slowing down a bit taking regular breaks and being honest with my family, friends and colleagues about how I feel has helped. Enjoy your holiday and take each day as it comes.😊

[pamsim]

Thank you all for your encouraging replies. Just to say I had the steroid injection last Thursday and I feel wonderful, almost back to normal and I can use my fingers and wrists for the first time in weeks. If it has affected my blood pressure I wouldn’t know, I haven’t checked as it would justcworry me even more. It’s a bit of a strange/upsetting feeling too knowing that it’s a temporary reprieve and things will obviously regress as it wears off but I have to admit I’m just enjoying the hiatus it is giving me. Anyway, I’m off to the USA next

and will begin Medication on my return. The specialist said the effects of this injection should last 6 to 8 weeks but I can have another one as a ‘top up’ if I wish before I travel. Has anyone had these injections close together as it means there will have been only about ten days between them? :/ I double checked with the nurse who said it will be fine and they sometimes inject new patients with three initially a few days apart.