Anyone else with SLE related pelvic girdle synovitis of sacrum & hip joints responding to mycophenolate?

[EOLHPC]

I'm globally hypermobile with polyarthralgia & SLE related synovitis diagnosed in several joints, including the highest cervical joints, & the metatarsals. I also get SLE synovitis pain episodes in shoulders, elbows, wrists, ankles, knees joints etc. I have been managing this type of joint pain all my life and am now 60, and on 400 mg plaquenil daily, which takes the edge off my synovitis mostly.....but not so well in my pelvic girdle.

Am also on 20mg amitriptyline nightly....am not sure if this actually is helping with my chronic pain, but boy oh boy does it help me sleep/rest more soundly).

Anywy, I find that only my rheumy's 4 week 10mg pred tapers really really do reduce my pelvic girdle synovitis symptoms (sacrum & hip joint SLE related synovitis). Over the decades, NSAIDs and analgesics have failed totally to reduce synovitis pain in these pelvic girdle joints. The rest of my spine (affected by spondylosis) has responded vvv well to permanent facet joint denervations, and anyway, apparently the other spinal joints are not synovial. I've spent a lifetime managing to have a sort of career inspite of joint pain....via the Alexander technique, gentle stretching exercise (Pilates, yoga etc), antiinflammation diet & supplements, meditation, pacing myself/rationing activity, mindfulness etc etc, but all that has only helped "so much"....this is why I was so thrilled by the help pred tapers do give me, and why i now have high hopes for myco

I'm about to try mycophenolate, because my highly lupus experienced rheumy doesn't want me on pred long term (although I am allowed 3 pred tapers per year)

So, I'm hoping to hear from someone here who finds myco has helped with their persistent SLE related pelvic girdle synovial pain in sacrum & hips

[misty14]

Could I ask how have your extensive joint problems been diagnosed?. I can't specifically answer your question but I admire the way you've had a career with such painful problems. X

[EOLHPC in reply to misty14]

Hi misty

Your kind words mean a lot to me. It hasn't been easy, but i do feel glad i seized opportunities and kept trying...I'll try to be brief in replying...but it's hard to see how to answer you without quite a bit more detail and background...but, hey, i'm childless (due to inutero exposure to DES) and at an age when I hope my story may be useful to others...so, for what it's worth, here goes:

The joints are, of course, just part of my typically lupus jigsaw puzzle of symptoms/secondary conditions. Joint symptoms started in infancy/childhood (when drs said they thought i had lupus but my mother never told me about these diagnoses). So, I left home in the late '70s unaware i had this systemic illness, but very aware i was prone to all sorts of problems all over my bod. also, a bad accident falling on my head had added spondlosis to my mix of health issues

Anyway, I only became directly involved in joint symptoms diagnosis when symptoms got so persistant & disabling that my work was significantly affected by the early '80s. I had done ok professionlly by then - enough to have been a head gardener. over the years that followed, Gps & ortho surgeons were no real help - putting me on NSAIDs & prescrip analgesics which just made me so groggy that at least my sprit was numbed . I wore a cervical collar a lot. As all my Lupus symptoms got worse & worse, the nursery I'd moved on to gradually shifted me into office work where my boss the marketing director valued & believed in me enough to let me work from home on a regular basis. That made all the diff! Meanwhile I attended a variety of NHS clinics which diagnosed & treated various named conditions in different parts of my bod, but no dr spotted the systemic cause linking everything. I was always highly compliant in maintaining ongoing treatments, and topped up what the NHS gave me with private complimentary therapies etc. I also got through a few big emergencies via A&E + inpatient spells + various ops & procedures, in which we now realise unrecognised lupus played a big role in (at the time, no drs figured this out)

By the mid-late '90s an nhs neurosurgeon booked me for a double cervical discectomy, which I avoided by opting to try facet joint denervations by his colleague pain consultant. At this point I begn to see osteopaths more highly experienced in hypermobility too. these health professionals began to look close enough at my joint symptoms to distinguish between joint probs due to that childhood fall and joint probs due to global hypermobility. They brought widespread synovitis into the diagnosis process.

But all this wasn't enough to prolong my career - I finally took early redundancy fom the nursery and joined my husband in the office of his small landscape practice, working minimal hours cause I had to lie down a lot, pacing my life & rationing activity very strictly. But even so I managed to satisfy a few big clients' requirements. While I became very depressed. I was fully retired shortly after the millennium.

Finally in 2010, the symptoms in my hands & feet became so widespread and dramatic that my wonderful new woman gp referred me to rheumatology. SLE was "re-diagnosed" by a highly lupus experienced prof Rheumy just on the basis of medical history & examination. Then, haha, my nearly-90 mother revealed that I'd "always had lupus". Treatment for SLE has been highly effective so far. The final verdict on the exact mix of my version of lupus syndrome autoimmune issues is gradually revealing itself. I'm happy & open minded towards my consultants' insights...who knows what they'll come up with next!

So, i guess my ? above basically sums up the treatment I've been receiving since the lupus "re-diagnosis". Most recently a top prof ortho surgeon has been helping me with my feet & hands. He has approached my condition by reconsidering most everything about my whole bod, and believes my DES exposure + a lifetime of global hypermobility + systemic autoimmune illness + my career & hobby choices have resulted in advanced global ligamentous laxity + chronic widespread synovitis. meanwhile, my rheumatology clinic thinks Ehlers Danlos is probably also in my diagnostic mix.

So, it is what it is!

Wishing you all the best & hoping my long reply is at least a bit useful

[misty14 in reply to EOLHPC]

Hi Barnclown

What a health story you have, I so admire your positive attitude in the wake of such tough health problems. I hope MycophenolAte is a good drug for you, I can say I used to take it and it did help my joints although I don't have the exact spine and hip problems you have. I'm still struggling to get a final diagnosis after 28 years of battling different health problems, at the moment my Rheumy can't decide if it's my joints or muscles that are aching so much so he's doing a wait and see for another 4 months and I feel dreadful some days. Take Care x

[EOLHPC in reply to misty14]

Thanks again misty.

28 years is a long haul: am vvvv much feeling for you!

Yes, I am chronic: I almost always stick to looking at the bright side of life. But this doesn't stop me feeling the dark side just as often & just as strongly, so I've had to work hard to find a realistic balance between focusing on the bright & the dark...I wobble sometimes, but mostly I do ok....with a little help from my friends (especially you all here)

Sounds as if your rheumy really cares about you and is trying hard to figure out your version of this dreadful condition. Am wishing you better health and much happiness this year!

Take care

[misty14 in reply to EOLHPC]

Hi Barnclown

I so appreciate your kind words too and wish you an excellent health result on MycophenolAte. You've got it spot on with my Rheumy, he doesn't want to put me back on strong drugs if he can help it which I understand, some days I understand it better than others!Lets face it we're human beings dealing with this! Hugs X

[EOLHPC in reply to misty14]

Well put!!!!!

Take care XO

[gazorpf]

Just a thought, but have your doctors ever considered Ehlers-Danlos as a possible cause?

ednf.org/

[EOLHPC in reply to gazorpf]

Hi gazorpf

You're pretty on the ball: snap: YES!

Recently at my rheumatology clinic, the consultant said she thinks the paroxysmal haemorrhages in my hands & feet are most probably down to Ehlers Danlos, + a dash of aschenbachs syndrome. She says the treatment i'm on is appropriate for those conditions too, though.

Well, at least more light continues to be shed on the ? of why my health has been so dodgy since birth.

Are you affected by Ehlers Danlos?

I do know enough about the condition, to realise that whatever version of Ehlers Danlos is affecting me has to be relatively mild

Thanks for replying