After 4 years since diagnosis I thought I was starting to work towards the home straight. I have had 3 relatively PMR pain-free years with my issues being more anxiety or “other stuff” related. My tapering has been slowed down considerably by a couple of GCA concerns which thankfully didn’t develop (touch wood) and I have been very carefully monitored with ultrasound and MRI and regular eye tests. I have remained pretty active and have not really suffered with withdrawal pains or achey shoulders/arms. I follow a Keto regime, I don’t over exercise, I keep stress as minimal as I can - all the right things.
I have been tapering at 0.25mg increments every 6 weeks for about 10 months, previously doing 0.5mg drops.
4 weeks ago I tapered from 6mg to 5.75 with about 3.5/4 weeks at 6mg as I wanted to impress my lovely Rheumy and show her how well I was chugging along. Plus I didn’t want to re-visit an earlier discussion about introducing methotrexate so was keen to show her that I could crack on with just steroids. For a week all was well. A little light-headedness but other than that, fine. I had the phone call appt with my Rheumy and she was happy with progress, agreeing to only mention methotrexate again if I hit a wall. The very next day I had a few shoulder twinges, ignored them and put it down to withdrawal aches. They continued and have very slowly increased over the last 2 weeks. I have tried paracetamol - it might have helped a little in the first few days, but I stopped taking it and the aches are definitely getting worse as the days have gone on. So today I took 10mg and plan to stick at that for about 7 days and then hopefully, if things improve, drop back to where I was pain-free at either 6 or even 7mg.
I’m sooooo frustrated and petrified that I won’t be able to get on top of this possible flare. I’m a busy Mum, lecturer, etc etc and need to be fully functional but can’t bear the thought of getting stuck back up on higher doses. My anxiety goes through the roof at higher doses and as I am pre-diabetic (thanks to steroids and despite having a no-carb/sugar diet) aware that this could potentially tip me towards Diabetes.
As a further kick in the doodahs, I was diagnosed with small vessel disease following a cranial scan to check for GCA last October. So my GP is gently asking me to consider Aspirin and statins. I have a family history of TIAs and also vascular dementia so I can understand the concern, but at 54yrs old I am reluctant to be on handfuls of pills per day. My neurologist isn’t concerned about the small vessel issues - my GP and Rheumy are. So I have the spectres of those two meds along with methotrexate looming.
I hope I’m doing the right thing by going back up to 10mg. I’m trying to concentrate on getting this flare under control and then I will deal with the other stuff.
Does this sound like a flare? Am I taking the right steps to deal with it?
And regarding the small vessel disease, any thoughts?
Thank you so much for your continued expert advice, everyone. Having your support is such a huge comfort.
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Burroughs123
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We usually suggest adding 5mg to last good dose for a flare-and staying between 7-10 -but you can stay for 14 days without impacting drop back down.
And probably back to 7mg..,
With your history, I’d go with the aspirin, guessing it the small dose daily and provided they agree with you, then try the statins. If they don’t agreeeith you, you can stop them.
I understand you don’t WANT add more meds. My late hubby had a triple bypass roughly same age as you - never taken meds before in his life - but as he said, if I need them I need them..
Thank you so much for your super-quick reply. It’s really appreciated. Ok, I will ramp up to 12mg tomorrow and stay there for around 10 days to do a proper mop up before dropping back to 7mg.
Yes, Asprin is an easy “take” I suppose. I’ll have another chat to my GP about statins. Like methotrexate, if they didn’t help or made me feel rubbish, immediately stopping them wouldn’t be an issue. I just needed to hear that from someone else.
I remember PMRPro commenting on small vessel disease a wee while ago but didn’t really take it in at the time. Hopefully she’ll be along at some point and remind me.
Oh dear - no idea what I was commenting about there! But if there is evidence of small vessel disease, have they done rather more investigation to rule out the possibility of it being GPA (formerly called Wegeners)?
If you google GCA and small vessel vasculitis some quite interesting papers come up. Where have they identified small vessel vasculitis? The Italians and Spaniards seem to have looked at it and consider it to be part of GCA and defining 2 subsets of GCA. One paper comments it may be a sign of a type of PMR and I suspect that might be the GCA patients who also have PMR symptoms since not all do. And other papers report overlaps of GCA and GPA.
I think I would want the input of the rheumy on adding medications. Is the GP gently nudging you on the basis of their desires or in behalf of the rheumy? Once you have the various opinions clarified, you can take a more informed decision that will sit better with you. Don't look at it as being "taking all these pills at my young age" - look at it as potentially getting me to an advanced age and feeling better while doing so!
Thanks so much for your detailed and informative reply, PMRpro. Sorry it took me a while to reply to it.
The small vessel disease was reported as “Age related involutional brain changes. Minor small ischaemic vessel disease” following an MRI on my head and cervical spine. Everything else on the head scan appeared “normal and unremarkable”. These scans were performed due to my continual occipital headaches. They found “multilevel cervical disc degeneration and bulge osteophyte complexes with neural compromise” indicating cervical spondylosis leading to cervicogenic headaches.
My Rheumy (DrM in Leeds) seems fine with introducing statins/asprin when I emailed her about it. The GP was acting on the MRI results and didn’t have DrM’s thoughts to react to - purely his own opinion, although he said that he’d be interested to see what the neurologist said.
The neurologist was dismissive of the small vessel disease and tried to reassure me that it was purely age related and not to be overly concerned about. She was more focussed on the cervicogenic headaches and recommended physio sessions which is what I am currently attending fortnightly. DrM’s reaction to the small vessel disease was interesting - she said that she was concerned about any inflammation going around my body but didn’t really relate it to GCA.
Anyhoo, in the meantime I am doing the 7-10 day raised pred protocol in the attempt to soak up the inflammation build up, and hopefully I should be able to drop back down to 7mg next week without any issues. And then try to continue a slow taper again!
I admire the way you are taking charge of your disease in a proactive way. You also seem to be surrounded by helpful doctors who are monitoring you carefully. I would be inclined to trust them over the aspirin question and a statin that suits you. I can’t help feeling that with your family history of dementia, it is a sensible precaution. I have frontal lobe dementia stalking the females of my mother’s side of the family and will definitely follow the advice if given it. My own pre-diabetes is lowering thankfully and I am not nearly as disciplined as you are about diet. I worry about the pressure you are putting yourself under career wise and as a mother. It is amazing that your are coping thus far but I worry that this pressure will hurt you down the line and you may well have to re-visit the decisions about pursuing your career in its present form. I hope you are blessed with a good employer who may be able the help you design your job so that you can build in rest and time off. Has anyone discussed Actemra as a steroid sparer. Many people have been helped towards the lower doses of Pred by taking this Biologic drug that enables you get down from steroids faster and to deal with the harmful inflammation. Well done for remaining so focussed on managing the diseases. You are truly inspirational. All best wishes. X
Thank you Jane - that’s kind. You are always so lovely, positive and supportive. I’m just trying to live my life as we all are.
I’ll talk to my GP again and see what he offers re statins. And I will also re-start the discussion with Dr M regarding methotrexate and Actemra once I manage to get this flare (if it is a flare) under control. What throws me is that I don’t wake in the morning with any aches or stiffness and have full mobility. The aches develop later in the day.
Careerwise - I’m actually going to hand my notice in shortly and leave at the end of this academic year. I feel like such a dinosaur as technology and IT are moving faster than I can keep up with. And, tbh, I can’t be bothered with trying to!
Hi, just to add to the other posts, regarding the statins, there are many of us on the forum who take them with no problem, but a number of us found that there were some that did not agree with them, aches, bad joint pain etc. If that is the case then it's worth trying a different one until, hopefully, you find one that gives you no problems. Rosuvastatin has worked for me, with no problems, for many years now.
Sorry to hear you're having this set back; fingers crossed it is a temporary blip, which it sounds like.
If you want to try and avoid more meds, using a continuous glucose monitor can let you know when and how you are getting sugar highs despite your diet. Also plant sterols can have the same impact on lowering cholesterol as statins - you didn't say what your cholesterol is and it sounds like you have particular risk factors but it may be worth trying sterols for a while . I wonder is your keto diet high fat. See my recent post on CGM and plant sterols.
Thank you for your reply. I’ll look into a glucose monitor so that I can keep a check on where I get spikes etc. Yes my Keto diet is pretty high fat and so a cholesterol check is a good idea.
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