I haven't posted for a little while and am just trying to catch up with what's going on with all of you lovely folks.
I had some great advice here prior to my trip abroad and with the right suncare and clothing, I managed really well. Just a few niggles - a few episodes of erythromelalgia, some hair loss and a stronger than usual reaction to fluorescent lights. Swimming in warm water was an absolute boon for sore and achy joints. Arriving back in the UK just after the cold snap at the end of March felt like gravity being switched on again! I could barely move for the first week.
Unfortunately things have unravelled a little and I have been in flare mode on and off since the start of April. Trying to manage day to day has been increasingly difficult. I've managed to keep seeing clients and have been keeping mobile but fatigue, brain fog, joint pain, migraines and other forms of unpleasantness have reared up when I have least needed them.
I had my rheumy appointment yesterday and will be starting Cellcept in the next couple of weeks after an appointment with the rheum pharmacist. This will be alongside hydroxy and the pain relief that I'm already (carefully) using. I've also been referred back to physio for SI joint pain. I'm really grateful that my rheumy acts so quickly to sort out presenting issues;
I'm just frustrated with feeling like rubbish all the time. I wonder if any of you have experienced general improvement while on Cellcept. I'd also appreciate any input regarding SI joint issues as I'm curious to know if physio has helped you at all.
Thank you for having patience with my ramblings and I may be a little slow with responses as I'm a bit knackered 😪
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flap7
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Interesting post, flap! Glad you’re back on forum!
Holidays are a must whenever poss, and yours was truly wonderful for body & spirit...but OMG do even wonderful “relaxed” hols set me off on my return with typical flaring signs & symptoms ( very similar to yours). Am on daily therapeutic doses of 1000mg myco cellcelpt + hydroxy 400/200mg alternate days + pred 5-10mg..and after hols i always have to increase to 10mg pred for a few weeks to stabilse before trying to slowly taper down
My rheumy followed the sort of gradually progression introducing meds to my daily maintenance treatment plan that your rheumy seems to be following: first hypdoxy, then added low dose pred tapers especially to help me recover after hols! Eventually i realised i did better to start 10mg pred before departing on hols, and save trying to taper back down to 10mg for my return home. Then my rheumy tried adding on daily myco cellcept which instantly helped me: especially with my chronic neuro cerebral manifestations + with my sacrum/pelvic pain! But i still need at least 5mg pred daily as well as the hydroxy (we’ve proven this by trying “pauses” for weeks/months) and during really bad passages i stay on 10mg pred for many months (as i am now).
So, your post is ringing LOTS Of Bells for me! And if i remember right, you’re diagnosed with simultaneous raynauds & erythromelalgia like me. Designing the right treatment & contingency plans is a long term trial amd error thing for a lot of us..so hang on in there. I hope cellcept and you get along happily
Are you diagnosed with a hypermobile connective tissue disorder? All my joint issues + especially my spine including especially sacrum & sacroiliac joints are very vulnerable due to my Hypermobile Ehlers Danlos Syndrome overlapping with my collection of immune dysfunction conditions. What’s helped me most for decades is alexander technique posture & movement training + my top hypermobile expert physiotherapist’s rehab routines & treatments. So, am glad you’re thinking of trying physio...and i urge you to find someone with plenty of experience of patients like us....over the decades the more “basic” all-rounder physios have been a waste of time for me (and some of those have actually damaged me...the same goes for osteopaths & chiropractors)
Just want to wish you every best wish...am hoping you’ll let us know how you get on...LOVE your photo !
Hi Coco, I tried to read your post when you responded initially but I had a rough few days of migraines and dizziness and I couldn't make sense of writing - it kept jumping about! I've put my eyes back in my head now haha 🙃
Thank you for your balanced and considered response. The thing that I always find incredible here is how truly unique we all are in terms of our 'collections' of conditions and how we and our team manage them. That said, we do seem to have a number of similar manifestations of this particular chameleon.
I've had my letter detailing the plan for Cellcept once I've seen the pharmacist. Starting with 500mg twice daily and going no higher than 1500mg daily due to my size/weight. This is in addition to the hydroxy 200mg daily that I already take. She has avoided prescribing steroids but will consider short courses of preds via GP if things get too rough.
I have no diagnosis of hypermobile joints but my knees bend backwards a bit and I can touch the floor easily without bending my knees. I've had spinal/pelvic/shoulder problems for a while but things are becoming more difficult and sitting with any weight on my right hip/buttock is almost impossible now. The physio I saw in 2016 was the one professional who recognised that there was something 'not right' and suggested that I demand a referral to a specialist so I trust that I'll be in good hands. I'm interested in finding out more about Alexander technique and hopefully I'll have something a little more bespoke from physio this time. It was after I kept falling over in the physio's pilates classes that we ended that experiment 🤕
We do also have simultaneous erythromelalgia and raynaud's in common - I'm wondering if cellcept will help settle those devils down a little as well. I quite like to keep the skin on my feet as I find it quite useful for long walks but it seems to want to fall off a lot just now.
Thank you again and I will report back once I've started with the new regime 💊💊💊
Hi again flap & thanks for your lovely reply. That physio in 2016 was a really good medic! I hope you can follow up by looking into whether yiu are living with hypermobility..lyiu may jnow this official UK hypermobility sipupport organisation already, but in case not here is a link to the section with their basic info re diagnosis:
I’ve also replied with more info about my version of chronic sacrum pain treatments below, under shareasmile’s reply about radiofrequency ablation (aka spinal facet joint denervations). This is the procedure my pain consultant has been performing on all my spinal facet joints since 1998...including my sacrum joints)
Sorry, i can’t actually say i’m convinced my daily lupus meds help damp down my version of simultaneous RPEM, but what is helping “just enough” to make life relatively more bearable are the following on prescription:
Daily Losartan from my rheumy
daily application of Flexitol urea 10% from my gp
+ of course all the self help techniques i’ve figured out over the 20 years during which my childhood onset raynauds became increasingly troubled by simultaneous erythromelalgia
Hi! Great experience with Cellcept I was taking 2000 mg/day. No side effects. I wish I could take it again as now I'm only taking 400mg of Hydroxochloroquine+ Aspirin and it's not enough for the tiredness and joints. Good luck and keep positive!
I had a tooth infection not related to Cellcept, but me avoiding to go to the dentist (not my fav place). I had to take antibiotics, so stopped Cellcept. And then I found out I was pregnant. Keep an eye on this! You shouldn't get pregnant whilst taking Cellcept. It's way too risky. High risk of malformations. Those 9 months were wonderful but with fear.
Cellcept was my treatment for Lupus Nephritis, and it worked perfectly well.
Thanks Dalilatm, I really appreciate your positive response - it makes me feel so much better about trying Cellcept and knowing that it made such a difference to you gives me great encouragement. I'm with you on the fear of dentists - I think I just find the worst ones!
Hi Just to add i am on 500mg concept to help with the sjogrens (,also have scle) . When I sent up to 1000 mg my white blood count kept dropping & my rheumy response was to cut it down. Also got very chesty cough.Ok now but still haven't my stamina back to what it was a year ago. Been trying but hard...just to tired... Seeing rheumatologist in June don't know if she is willing to increase it to see if I am more tolerant... Hope you get on with it. ML
I'm just now catching up on posts and wanted to comment on your SI joint issues. I had terrible SI joint pain on the left side several years ago. I could barely sleep as rolling over or adjusting in bed was excruciating. Sitting for longer than a few minutes was also miserable. I was referred to physio who did the test associated for diagnosis--lay on side, doc bends down on one leg.....can't remember details, but she also located where the pain radiated from and made the diagnosis of SI joint dysfunction. First, I went through physical therapy, which gave no relief--even elevated the pain. Then I was sent to a pain doctor who first tried steroid injections with lidocaine. This gave immediate relief with the lidocaine--a good sign that the joint is the problem, but the steroid itself barely made an impact. I then had a radiofrequency ablation. They insert a probe through the buttock =/ and ablate the nerves in the joint. This procedure cured me of the pain! Granted, I had to have it again about a year later, but the doctor said that was not unusual. Since then, I have been pain free in the SI joint. I hope you can get relief soon!
Thanks for sharing your experience shareasmile. You are describing the pain that I'm feeling exactly, just on my right side. I had read about the injections into the joint and radiofrequency ablation but it's good to hear a first hand account. I'm so glad that treatment worked out well for you. I'm keeping my fingers crossed that a non-invasive approach will give some relief but I won't be afraid of trying other things if this strategy doesn't work out. I've fought really hard to stay mobile and I'm not about to give in. At the moment, if I want a long walk, I'll take maximum pain relief before I go out. I do the same if I need a good sleep without constantly having to turn over to be comfortable. 👣🛌
Radio frequency ablation aka denervation is the type of operating room procedure my Pain Consultant has performed several times over the past 20 years to all my spinal facet joints bilaterallmincluding those in my sacrum. These procedures are more permanent than steroid injections aka nerve blocks to the same joints, but steroid injections are usually used as diagnostic tests because a temporary positive response to these blocks indicates that ablation/denervations are more likely to be effective. Here is a good link on the subject:
As i said recently in more detailed replies to our twitchy’s post on this subject, the denervation/ablation procedures have numbed which ever aspects of my chronic spinal facet joint pain these procedures could, but i still do also need my daily lupus meds fighting inflammatory process in my synovial joints (ie sacrum & uppermost cervical spine joints) + physio rehab routine + self help techniques/complimentary therapy routines in order to successfully manage my sacrum-related pain day to day. Here is a link to twitchy’s discussion, including my detailed replies:
Thank you for all of that info Coco - I've had a read of the thread and have been reading up also on the hypermobility . My Mum's kneecaps used to slip out of place quite often when she knelt down and my sister and I both have knees that bend backwards (less so with age) and a few other markers so I may have a mild form. I have never been able to carry a pregnancy full term so for me also childbirth is not something I can factor in to explain hip/pelvic/ sacral pain.
I realise that your awareness of your body, mind and the conditions that you live with has been hard won and I marvel at the way you manage to balance it all. I will keep reading and asking awkward questions until things become at least a little clearer 🔎
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I was taking 2000 mg/day. No side effects. I wish I could take it again as now I'm only taking 400mg of Hydroxochloroquine+ Aspirin and it's not enough for the tiredness and joints. Good luck and keep positive! 
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