I’m not taking any RD meds anymore.

[Blackwitch]

I’ve been told after nearly 20 years I might not have it! However, have got Secondary (to RD) Sjögren’s Syndrome and have been quickly put on Folic Acid. Nothing happens quickly around here. I have a rheumatologist appointment on 14th. Maybe I’ll get answers. Maybe not. 🤔

[Spanelmad]

Can I ask which meds you were on?

[Blackwitch in reply to Spanelmad]

I went through all the DMARDS starting on Celebrex prescribed by my GP in the beginning. One by one I had bad reactions to all of them, even going back and trying again with Methotrexate injections. I then went over to biologics. I was only taking Benepali but that made me ill too when it eventually started to work. The only thing that ever worked was the Depo-Medrone steroid jab. If I knew I was having one , I could plan visits etc. Them my Rheumatologist changed and she’s starting from scratch. I also have had ME/CFS since April 2020 so some days even getting out of bed is a struggle.

[Lucena62 in reply to Blackwitch]

I'm having similar experience with new Rheumatologist, starting from.scratch seems quite the fashion atm. Where are you based?

[Blackwitch in reply to Lucena62]

I have the disadvantage of living on the Cambs/Lincs border. GP in Lincs and hospital in Cambs. No other GP’s will take on patients from ours so the only option is to move house.

[Lucena62 in reply to Blackwitch]

Gosh that's tough, the shared care carry on across 2 trusts/regions shouldn't be that hard. I'm based in North East

[Blackwitch in reply to Lucena62]

You’d think it would be easy but none of the computers speak to each other and my GP speaks to nobody, including me. I also have degenerative disc disease with rotational scoliosis but he seems to think a Pain Clinic cured me of that. I saw someone twice and all we did was go over my medical history because the surgery hadn’t provided them with any. I was then discharged so my GP must think they’re miracle workers. 🥱

[Gottarelax in reply to Blackwitch]

I'm across a border. East Riding GP and North Yorks Hospital. My only issue with it is the fact that East Riding (council, GP surgery, pharmacy) won't have anything to do with my sharps disposal and if I take it back to the hospital I get a lecture about getting the council to take it (N Yorks do). Other than that, the service is fairly seamless. Do most patients at your surgery get referral from your surgery to the Cambs hospital or is it due to the specialty?

[Blackwitch in reply to Gottarelax]

I only see Rheumatology on a ‘regular’ basis. The Cambs hospital is the nearest, only about 10 miles. My hospital of choice is still in Cambs but a 70 mile round trip which plays havoc on my back. When I was first using a sharps bin our council wanted me to leave it outside the night before! I refused and emptied it into the hospital sharps bin. When I started on Benepali, Sciensus delivered my new injections and took away my old sharps bin at a prearranged day and time. I’m not on any RA meds at present.

[cyberbarn]

As scary, worrying or concerning that seems, it might be a good thing. Medicine has changed a lot in the last 20 years and it isn't common to have incorrect diagnosis either. We had a starting from scratch for my son's condition, (not a rheumatology one) because I just felt that what the clinicians were saying wasn't right and they were missing something.

Sure enough they were. They assumed that foot pain was caused by lack of exercise but it turned out that there was a physical anomaly that was causing the pain. I was so glad we did a 'star again'.

I hope your reset is equally useful.

[oldtimer2]

You obviously still have an autoimmune condition and require medication for that. It might not be attacking your joints right now but....it's still there as you have another autoimmune condition presenting.

About thirty years ago I was told that I didn't have Rheumatoid Disease - after nearly twenty years on medication. I continued to have occasional small flares without any preventative treatment. The Rheumatologist was in denial and the GP gave me occasional courses of steroid, not good management. Then after moving to a new area, I developed Polymylagia Rheumatica followed six month later by a classical outburst of Rheumatoid Arthritis that anyone could recognise with fantastic red swelling of my wrists and hand joints (and others). Now with new rheumatologists, I'm being better looked after.

It does lurk!

[Blackwitch in reply to oldtimer2]

This new Rheumatologist wants to do a complete set of MRI’s (so she said) but so far has only done hands and wrists. I think I’ll be 6ft under before they’re completed. I’m just feeling so depressed by it all. x

[oldtimer2]

I can see why you're feeling down about it all. It's bad enough starting from scratch again without encountering delays. Post all you like on here for support and ideas whenever it's getting you down. People come up with ideas and we do understand what you're going through. Here's hoping for a rapid progression to treatment.

[Stills]

just read your profile and your final words made me smile. The thought of three identical triplet grandchildren made me smile even more. I know these rheumatoid conditions can be very wearing but there’s always a reason to smile , if not today then tomorrow and until then have one of mine 😀

[Blackwitch in reply to Stills]

I’ve just looked back at my profile and thought it needed updating but I found it very difficult, probably because I’m only using a phone. I had to change my Avatar as well. Poor Ada is so confused as she’d always been with our rescued labradoodle from day one. She cries for him daily which starts me off too. As for the triplets 😈😈😈, they’ll be 13 in December so I won’t have to update again. 😂

[bookish]

Hi, Sjogren's is never secondary, just co-occurring (in this instance). You might find this useful sjogrensadvocate.com/abouts... . Another one that is not easy to diagnose, nor to get correct treatment for.

How low was your folic? Given the ME/CFS (post covid? or some other trigger) then vit B12 needs checking too. Serum test alone may not provide the information you need - although there are tests which can rule in a deficiency there are no tests which can rule one out. Even if low B12 isn't causing some of your issues, your digestive difficulties are likely to be causing low nutrient and vitamin levels and low B12 will not help you one jot. If there is a possibility of low B12 you should not have been put onto folic first - you treat the B12 then add the folic.

[Blackwitch in reply to bookish]

I did suggest to my new Rheumatologist that I may have had Sjögren’s from the beginning as all my clinic letters showed differing diagnoses. When I last had my appointment, I had blood tests and only got a text message from my GP saying he had been asked to start folic acid for 3 months ASAP and there was a prescription waiting for me at the chemist’s. Of course I looked it all up but the information on my medical records is not complete due to incompatible computer systems. My folic level was 2! I already know I have macrocytosis (large red blood cells) so assumed it was that. Amazing that until all this started I was fit (I did smoke for a while) but don’t drink alcohol and have a very good diet. I’m classed as obese, probably because I used to be 5’3” and now 4’11” due to my scoliosis. I have no appetite and don’t have sugar and don’t like bread. I joined a diet programme beginning with ‘Z’ and found I was eating all the right foods but I couldn’t keep up with the amount I was expected to be eating. I’ll read your link. Meanwhile, I am writing an ever increasing list of questions for my appointment next week. Thank you for the information. Things don’t move very fast in these parts. 🥱

[bookish in reply to Blackwitch]

Hi, the macrocytosis could be lack of folate but also could be lack of B12 (or both, as is common). If you don't have a copy of your blood results it would be worth asking for one and making your own hard copy. Best of luck with the appointment.

[Blackwitch in reply to bookish]

Thanks bookish. I do intend to make sure I get my test results, direct from the hospital, sent to me as well as my GP. It would also be good to get an explanation about a few things before I run out of steam - and appointment time. I’m swatting up on Sjören’s but it seems to be going in my one brain cell and out of the other side.