Another rheumy review reveals that all my blood markers are back within or near normal. This includes my CK, which has gone down from over 2,000 to 60, thanks to 4 months or so on 25mg methyl prednisolone. Only my ANA remains stubbornly on 1:2,650. In addition, the chronic nausea I've had for the past year has vanished, and my daily episodes of sweating and shaking are less intense.
On the other hand, my muscle weakness has not improved, and I am still so incapable of effort that I am effectively housebound. The high pred dose has also made heartburn a daily (and nightly) misery.
We talked about trying to find another DMARD or biologic that I *can* tolerate, but as he said, "we are out of easy options". The conclusion was to taper the steroid to between 6-10mg daily and review in 2 months, with the hope that I can find a dose slightly higher than normal which is enough to suppress my auto-immune response and cover my adrenal insufficiency, but not so high that it causes serious side-effects. As he said, "but we might have to accept some steroid side effects as the lesser evil".
He thinks the endo should be doing more to address my exhaustion etc, but as I said, the endo thinks it's all down to rheumatology to sort out. "That's what everyone says," he moaned.
Meanwhile, an inadvertent glance in a mirror yesterday afternoon revealed that my eyes are so swollen and bruised-looking, I could easily pass for a post-fight heavyweight boxer ('but you should have seen the other guy').
My life in The Twilight Zone continues on Friday, when I see the specialist to discuss my recent sleep study. x
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whisperit
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So have you exhausted the DMARDs now Mike? I’m hopeless at remembering what others have already tried but I take it you have tried Methotrexate, Leflunomide, Mycophenolate and Hydroxy as well as Aza?
If so then I guess I can entirely relate, although I’m not allowed Prednisolone longer term again due to my hypertension, high diabetes risk and I don’t want it again anyway because of the horrible impact it has on my GI system. But on the other hand I do fret about not being on anything at all for a long time due to.. well my high CVD, Diabetes, hypertension etc risk plus severe fatigue due to consistantly elevated systemic inflammation. It’s a lose lose situation to be in really.
If you have exhausted all the DMARDs then what about Rituximab/ Biologic infusions? Was this option discussed?
I spoke to someone on the BSSA helpline recently who said that many of the phone calls they receive are about severe drug intolerance and eyes being puffy, dark shadows and general heavy weight appearance which I share with you just now. Fatigue and dry eyes seem to be the general consensus. X
I haven't been anything like as diligent as you, Twitchy! Apart form HCQ, I've only had MMF and Aza. But they both resulted in emergency hospitalisations, so both rheumy and I thought it worth delaying further experimentation for now x
So we are kind of in same boat then apart from my ANA appears to have dropped where yours is soaring. What are your inflammation markers and immunologlobulins like these days do you know? Puffy eyes can be Graves I think so seems your rheum is definitely onto something re likely endo negligence 🙄 x
Lol. There were 2 students in on my consultation. They looked a bit shocked at how much I talked back/down to my rheumy! My inflammatory markers are normal or nearly normal. Haven't had thyroid levels done lately, though x
Nah you’re not a talker-down type Mike - just someone with the wrong but right kind of expertise. Let ‘dem students learn from you - you have a lot to teach. X
Sorry, results not to hand atm, and I no longer have room for them in my head. As for the 'talking down', I'm afraid I DO do that. The excuse being it's overcompensation at feeling so powerless. And he's 20 years younger than me too!
I just wondered as thinking we each have our own “normal” with inflammation. I think that kind of talking down is probably valid as a consequence of medical PTSD and the previous Fibro misdiagnosis?! X
Hi Whisperit, I think I must have been the other guy in the ring...🤼♀️ one day I'll have the courage to post a pic of my face 😱 XOX
With you in the Twilight Zone, but be aware a collar size of <14" inches does not rule out OSA...I'm BMI 20 and have AHI 6.7 (I stop breathing 6.7 times an hour, under 15 is below the threshold for NHS treatment), and with factors not taken into account during polysomnography (permanently blocked nose due to 'severe functional impairment' that had cleared the night before because I stopped used the steroid nasal spray prescribed for it 🙄(ENT said: 'can happen'), swelling of lips, tongue and god knows what else during flares, recessive jaw means my tongue blocks my airway during sleep, Candida overgrowth - I was awoken from my sleep study and threw up a mouthful yeast 🤮 (sorry!)).
I had the multiple sleep latency test too, with my brain wired up the next day to test for daytime sleepiness...so I had the pleasure of going to the hospital cafe three times, between tests, with wires coming out my head!...and people stared at me less than they normally do! 😂
If things are worse when flaring, point that out, as they may just walk away, or suggest a psychologist, as they did for me. 🤪
Bear hugs, and be well. Where there's a dog, there's a way! xxx
WOW! Thank you PRO!!!!! It was GP put me on a strong one on repeat prescription with no follow up, no ENT referral (polyp 'completely blocking my left nostril'...HELLO? I actually forced an apology for that one!! 1 out of 17...still no resolution for unilateral functional nose problems) and after a year on it, my nose had completely swollen up and was bleeding! Plus curries tasted like porridge...🙇♀️ So glad you're there! Helping me keep my sanity! xxx
Him indoors and I were discussing the standard of medic's learning earlier this evening. We were told by a close friend and colleague that in the US medical students aren't taught physiology now, they sit around and discuss it.
Thanks - sometimes we get used to stuff - chronic pain, numbness, constant tinnitus being mine. But as with your nasal issues this isn’t one I will come to terms with ever. Like you I’ve always loved my food and can only recall delicious smells with great nostalgia. health.uconn.edu/tasteandsm...
Oh Whisperit, glad your feeling better than you have in a long time but hope they can help more with the fatigue. Interesting what Friday brings re sleep study resukts!. It's tricky balancing risk versus benefit with the steroids but it sounds like a good plan to keep your dose between 6-10 mg and not worry as much about their side effects!. A lot of their side effects if you get them are treatable like osteoporosis , heartburn and diabetes!.Quality of life is so important. Your being well monitored for them and you may not get them as my Rheumy said to me. Presumably you take a calcium and Vitd tablet.?. Do you have a DEXA scan to test your bones ?. There are also bone strengtheners tablets or infusions but you probably know all this yourself!. It's a good plan you and your Rheumy have come up with with a review for other drugs if needed!. It's a constant juggle!.Interesting how each consultant in our care expects the other to sort things out!. We can be piggy in the middle!. All the best for Friday. X
You make a good point about the osteoporosis issue. I do take vit D, but this may be a good time to review the likely condition of my old bones. I'll raise it at my next appmt. You're roght about the juggling acts we have to do, we're like those plate spinning acts that used to be on children's telly Hope you are doing OK today x
I'm glad you'll raise your bones at your next appt. Whusperit , it is important as you've had so much pred. I do speak from experience as I've not had the high doses as you but stil l developed osteoporosis as been on steroids a long time. I'm having a bone scan soon to plan more treatment!. Im having a rubbish week health wise and wonder also if backache isn't a fracture!. Thanks for asking. Can't we worry about so much?. Glad my GP appt for blood resukts is Monday!. Good luck tomorrow and keep spinning those plates. Your so right about it!. Weren't they also on the generation game with Larry Grayson?. 😊
Thanks so much Whisperit, those were the days eh!. Ha!. 😊 I don't really think I have a fracture as I didn't feel anything snap and pain does vary whereas it wouldn't but I'm ever the optimist !. Do hope today went well and you get more needed help. Fatigue is a tricky symptom to treat and so disabling for us!. I'll let u know how Monday goes. X
How did Friday's sleep resukts go?. Hope helpful for you. I've just been to new GP and blood sugars were normal so at least I'm not diabetic!on steroids!. Not sure about adrenal insufficiency as didn't ask and when I showed him my list of symptoms he said all symptoms of stress!. Im going to ask my Rheumy about it end of this month. Do feel lousy but trying to keep an open mind!. Hope your having a better day. X
Reassuring that you've not gone diabetic! It's one of those that is always kind of hovering in the wings for us, isn't it?
Thanks for asking - sleep consultant said I have a very clear insomniac sleep pattern but nothing sinister. "There are no treatments for insomnia, except CBT, but I will give you a script for melatonin if you think it'll make you feel better" ! At least he was honest - and he also offered to see me again in 6 months. So another 'no news is good(-ish) news' episode x
Thanks so much for your great message Whisperit. I feel so pleased I'm not diabetic and agree that it's something we can think about all the time because of the steroids!. It's a triumph as I've been on them over 20 years and good timing for a boost for Dexa scan on Friday!. I feel for you and agree also we can have so many no news is good news episodes but are still left with coping with difficult symptoms that affect our quality of life!. Mixed feelings from the sleep Consuktant but good I guess he offered something and will see you again in 6 months. CBT you can do online!. I guess I had a similar appt with my new GP as blood sugar ok but still have symptoms he put down to stress!. I found out that he's not looked at anything to do with adrenal function so I'm free to ask my Rheumy on 23rd and to be fair GP said to ask him too at my previous appt!. So it goes on for us but it's helpful we can share on forum and realise we're not alone in our battles. Take CareX
I'm so pleased to hear that things are less over-whelmingly awful. Do you have anyone to take you out? Even just a drive in the car or taking in a beautiful view can help.
I hope things continue to improve, I can't really imagine how ghastly you've been feeling. Big hug, Clare xx
Thanks Clare, Several people have offered to take me for a drive. I feel ungrateful when I turn them down, but recently the effort of getting to and then into a car, and then sitting in an awkward seat for 20 minutes or whatever has been too daunting. Instead, I've been trying to bring the outdoors in, playing birdsong and nature sounds all day on the laptop and leaving the living room door open (I hope to encourage some of the garden birds in. I have a fantasy about leaving the living room open day and night, and having birds roosting and nesting on the bookshelves.... lol) . Keep posting here to let us know how things are going for you? x
Ha ha! Birds roosting indoors sounds rather lovely but, for us, the reality would be rodents, both dead and alive, as the cats bring them in and Fred the puppy spends wonderful hours chewing on them. Bleuggh.
My father, struggling with his RA, finds it very effortful also to get in the car and go out. I can only hope that you get on some better treatment soon that affords you better quality of life.
At least the weather is beautiful ATM and can be enjoyed indoors as much as out - it all helps keep the mood up, doesn’t it? Xx
Rutiximab is the only one that my rheumy has mentioned, but who knows? Too many plates to spin, so one thing at ta time for now. Top priority = getting a decent night's sleep x
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