Coming down from Kenalog

[Gottarelax]

Back in June, about 6 weeks ago, I had a kenalog injection (80mg). It took 3 weeks to get to full effect (which was about 50% effective) and now I feel like I'm going back to as I was. I'm still waiting for my DMARD to be prescribed so not too surprising. I realise now that when I'd had the injection, my appetite gradually increased loads and all of a sudden along with the joint symptoms coming back, I feel sick all the time (almost like I have anxiety when I don't). Is this normal with steroids and withdrawal?

[summer32A]

I don't know I had in the past steroid injection and found them great..the generalized sort in the bum!Since pandemic no one wanted to do them too risky!!.

Depomedrone

I have had my Morton's neuroma injected privately twice.

That helps too

It was oral steroids that increased my appetite and mood.

Anxiety and depression can creep up with this illness

I hope you get your dnard soon.

Try and see if you can get any hydrotherapy in the mean time.

Or find a friend with a bit tub.

That lovely warmth helps x

[Gottarelax in reply to summer32A]

Thank you, I was injected in my thigh. It’s weird to get the emotional side effects!

[AgedCrone]

That sounds par for the course for Kenalog…it doesn’t seem to be used for RA very often. Depomedrone seems to be used more often… ..both are steroids…but different types.

Have you asked your rheumatologist why it is you haven’t been started on any RA meds? Have you actually had a confirmed diagnosis of RA yet.. ..or are you still being investigated?

Do call your rheumy nurse & tell her about the reaction you have had…it may have a bearing on any future drugs you are prescribed.

[Gottarelax]

My GP tested for Anti-CCP which was positive and so sent me for confirmation of RA. I have seen 2 rheumatologists. The first was private saw swelling in fingers and other joints but said that I couldn’t be prescribed methotrexate unless I had an NHS appointment so went to NHS. The GP had also requested hand and foot X-rays which had come through by the time I got the NHS appointment. I told the private rheumy that I was having X-rays and he said that he didn’t expect to see damage but it would be a good baseline. The second rheumatologist (in the same team as the one I saw privately but he was on holiday) looked at the X-rays which looked perfect and examined me (at the point when the steroid was in full effect). He said that he was not so sure it was RA (or RA only) and wanted to do an MRI of my hips before treating. He also said that he would have expected a better response to the Kenalog whereas the 1st doc said it may not fully work. So tbh I’m a bit confused by it all. I have oral steroids to hand (prescribed by rheumy 2) but suggested that I don’t take if I can stand the pain until after the scan. From family experience of steroids and interference of thorough diagnosis I agree and won’t take them until the scan is done. So I keep wavering between RA and other IA/CTD, hoping that I get a firm diagnosis and appropriate treatment soon. My mum and sister are in this state of having different rheumys with different opinions and not getting a clear treatment pathway ending with mismanaged with steroids most of the time as they lurch from crisis to crisis and I really don’t want to end up in that position.

[Runrig01]

I must admit it does seem strange administering a steroid injection, prior to a formal diagnosis. For exactly the reason you describe, it eases the inflammation making it impossible for a rheumatologist to assess properly, and it masks the inflammation in MRIs. I was on steroids prior to my inflammatory arthritis diagnosis for polymyalgia, for which steroids are the only treatment. I had to do a rapid taper down to 5mg and stop nsaids prior to my scan, due to concerns re it masking the inflammation.Kenalog generally takes 2-3 weeks to kick in and lasts around 2 month usually. It used to be used a lot for hay fever patients, till nhs banned its use. I’m assuming this was the private rheumatologist who administered it, as it’s not used much in the nhs now. Depomedrone and methylprednisolone are the favoured steroids. Steroids do have anxiety as a side effect, and they do increase appetite. It may be worth seeing your gp for an anti-emetic for the nausea. Are you on any new meds that could be causing the nausea, if not it may be the inflammation contributing to it. Unfortunately getting an inflammatory arthritis diagnosis takes time, as so many of the symptoms overlap each other. It sounds like your rheumatologist is being thorough which is good, as you don’t want to be given a diagnosis for it later to be retracted, due to insufficient evidence. I’ve known several people diagnosed without all the evidence, started on biologics to later have them stopped due to a different rheumatologist disagreeing with diagnosis. Even though the biologic helped, it had to be stopped as there is very strict criteria to its use, one being a formal diagnosis of one of the conditions listed. You will get there, meantime rest up when you can, and take regular pain relief. I would also chase up your rheumatologist re dmards if the plan was to start them, although it’s possible they want to wait till mri is done. Do you have a date yet for your MRI.

[Gottarelax in reply to Runrig01]

Everything you say makes sense and I would prefer to be patient and get a diagnosis that will not be contested. I’m waiting on my date for the MRI scan but it should be in the next couple of weeks. I am taking naproxen and lansoprazole in the meantime. Perhaps I should stop those for a few days before the scan also?

[Runrig01 in reply to Gottarelax]

I was told to stop my nsaid for 2 weeks prior to scan. Won’t pretend it wasn’t difficult 🤗

[Gottarelax in reply to Runrig01]

Ouch!! I have had my symptoms increase since I started on NSAIDs by my GP back in May. I now feel, on the NSAIDs what I felt like at that first appointment (pain in nearly every joint and pretty immobile) so I don't fancy finding out what the NSAIDs are masking. I may give myself a week off them...but I still have to be able to get to the scan 😅

[AgedCrone in reply to Gottarelax]

It sounds as if there are too many opinions in this mix.Didn’t the private rheumy explain about having to try two or three DMards…one of which must be Mtx, before you can be funded for Biologics….which are much more freely prescribed these days.

All this time wasting must be very upsetting for you.

Is there any chance you could see just the one Rheumatologist & go with his/her advice?

I have only had two rheumy consultants in 20+ years…..

I was originally diagnosed privately by a rheumatology professor ….who did all the tests…then as he put it…”If I had what you have I’d want xxxx to look after me”..& I was referred to that rheumy by my GP.

But whatever path you take…..I hope the docs get a move on…& find something to help you.

[Gottarelax in reply to AgedCrone]

There was no talk of biologics but the 1st (private) rheumy said that they'd try MTX and then see how things go. I asked to be referred to the same Dr at the NHS but he was on holiday at my appointment and I had his colleague. They both seemed nice and understanding but I think that the 2nd was more cautious. I can understand this as my presentation tends towards hips, knees and shoulders so much more like polymyalgia. As times goes by though I seem to be getting more pain in elbows, wrists and ankles with some pain also in fingers (which were apparently swollen at my first appointment). I'll be glad to get past this stage but I'm trying to be patient as the right diagnosis is so important. I know a lot of people have to wait a lot longer and I am so fortunate that the GP was on the case and got the right tests done before I even had my first GP appointment so could refer me straightaway. It is a little worrying though that the symptoms are coming back so soon after the steroid jab. It's like I had 1 week of feeling capable again and now I'm regressing.

[AgedCrone in reply to Gottarelax]

So do you have a Sero positive rheumatoid factor…if the first rheumy Consultant said he would start you on Mtx..it sounds like you do….& then you saw his Registrar …who didn’t know that…although it must have been in your notes. 🥱When I had steroid jabs way back…they went from zero to lasting around 12 weeks…so I decided it was a case of suck it & see, but don’t be too disappointed if it’s zero.

Hope you get sorted soon.

[Gottarelax in reply to AgedCrone]

I have anti CCP but not RF. My CRP was very high. It was another consultant in the same dept rather than a registrar that I saw for the 2nd consult.The first consultant saw swollen finger joints (must have been mild though as I had no idea) but I guess they had reduced with steroid so not apparent in second consult. Also X-rays which were not seen until 2nd consult showed no damage.