Friends, I need your advice and support. I can feel my fear level rising in anticipation of an appointment next Monday with Neurosurgeons at Brighton Sussex Hospital following the finding of a pituitary tumour in January.
This year has been a horror for me but I have soldiered on with my tapering and now walking a tight rope at 3.5mg in my eighth year of PMR. The fatigue is terrible, giving me days of what I call “failure to launch”, with serious brain fog, immobility and pain in my jaw and face due to teeth clenching. I am awaiting the outcome of a synacthen test two weeks ago but my adrenal glands are clearly struggling. I am under the Endocrinologist due to high levels of prolactin.
I live in East Sussex but don’t really know my way about and the many hospitals along the south coast I have been sent to. I have already postponed my appointment at Brighton once because I need someone to take me and be with me for the consultation, and my family aren’t around.
Investigations this year have not only revealed this unwelcome pituitary tumour but also the blood abnormality MGUS and atrophic gastritis. I have no symptoms of anything that I didn’t expect with PMR and tapering pred and not yet been offered any treatment for any of it, just further investigations. 2024 has not been the year I planned.
So advice please, a week away from this scary event, should I increase my dose to get me through this period of anxiety? Any support welcome from this great community xx
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Zebedee44
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If they haven't told you you mustn't, then I would up the dose to help. In fact, I wouldn't have continued with tapering to be honest given all the curve balls you have had. After all, part of the recovery of adrenal function involves the pituitary and if you have a pituitary tumour, maybe that bit of the gland isn't feeling up to snuff either.
They don't treat MGUS as far as I know if it is dormant, only when if wakes up.
Have you been tested for H.pylori which is a common cause of atrophic gastritis? There are a few underlying causes - hence the need for further testing. But usually it can be managed well with diet and lifestyle changes. If they haven't stuck you on the 2 week cancer referral pathway they are presumably aware but not concerned at present,
Have you no close friends who could come with you to the appointment? Is there a local befriending charity that helps in such situations?
Thankyou for being there, PMRPro. Yes I do have a friend who is taking me but at 86 he doesn’t much enjoy driving in a busy seaside town and parking. But I darent drive myself.
My taper has slowed down considerably and I certainly have no plans to continue down at this time. The multiple stresses I have dealt with this year have not left me as anxious as this tumour business but a week off and the fear is mounting. Should Itreat it as sick day rules?
What about him driving you to somewhere close and easy to park and getting a taxi to the hospital door if taking a taxi all the way is out of the question.
No, I don't think SDRs apply here really though I do see where you are coming from.
Very sorry to read about all your issues. I really cannot comment constructively on most of them, but, some three years ago, I was diagnosed with multiple myeloma, which they subsequently changed to MGUS, and then back again to multiple myeloma, which they describe as “smouldering “.
In either case, there was no treatment, but I am monitored on a three monthly basis with blood tests.
Hi, and Thankyou for replying. The blood test results only came back recently so I am waiting to hear what comes next. It has been a year of tests and unwelcome results. As if PMR itself isn’t a challenge enough.
Hi Zebedee, Just wanted to send you my best wishes and a hug. You have been going through it this year and I hope that after next week you will be in a better place. Please update us as I am sure many of us read posts and hold our fellow forum members in mind, you will be in mine.
Thankyou so much for your care and for the hug. Now that I have reached out to this community I feel less alone and scared. I shall be relieved to get beyond next Monday and know what lies ahead. 🥴
Hi so sorry to hear your story. You are doing well to cope. I know Brighton really well. If your friend drove you to Brighton marina you can park there in multistory near the cinema — free and easy to find turn right as you come into Marina. You can get the number 7 bus which runs every 6-7 minutes just next to macdonalds which is opposite car park and it’s a 10 min max ride to Brighton hospital which has a stop outside and one opposite for return. If you have a bus pass it’s free. Maybe PALs might be able to offer some support when there for helping with your appointment. The hospital is new and car park to the right but possibly not very big. Good luck and try not to worry.
That is really useful information and thank you. Other people had suggested parking at the Marina but you have added the bus information which is great. Hopefully driving to and from the Marina from my home on the East Sussex/Kent border (about an hour and a half) will be easier than trying to drive direct to the hospital and finding somewhere to park. I really need my driving companion to be with me for the consultation so it’s no good if he drops me off and goes away to park somewhere. Especially is the mobile signal is unreliable. Bless you 🙏
I was diagnosed with smouldering Myeloma around the same time as PMR. MGUS can progress to Smouldering myeloma but the percentages are so low I really would rule that out of things to stress about. The PMR is the thing that kicks my butt the most!
I barely know which condition is which in terms of symptoms and management these days. I’m at the lowest dose of pred that I have ever been at after eight years of PMR and expected to feel pretty rough, now I don’t know what’s going on and what I can do about any of it.
I wish I had an answer! I'm sure there's some connection to PMR and myeloma as the crossover of symptoms is very similar. But the myeloma nurses who are brilliant tell me it's possible to have more than one condition. The rheumy on the other hand is useless and tells me I've not got PMR. So all I can do is have 3monthly blood tests for the myeloma and hope all remains stable, and concentrate on the PMR as that gives me the most grief..adrenal insufficiency is most unpleasant! It does help to know we are not alone on this roller coaster - though I wouldn't wish it on anyone.
I don’t think anybody that hasn’t experienced it has a clue what we are talking about, not just about PMR but about adrenal recovery and the horrible state we are left in while we negotiate the lower doses. I feel really unwell a lot of the time! Now I am learning more about the pituitary adenoma it seems steroids are also involved, as well as cortisol levels. I thought the end was in sight, now it seems there might be no end (to steroids) for me. I hate being a pill popper!
It's the sheer exhaustion, often accompanied by the wobblies. My partner is slowly, and I mean slowly, grasping the concept of it..but he finds it easier when I tell him I'm running out of spoons. 😁
Hello Zebedee, I'm sorry you've had such a tough year. It's understandable that you're feeling anxious about next week's appointment and the waiting doesn't help, but you will get through this.
In the meantime, try to distract yourself with something you enjoy doing - maybe in the garden - as worrying won't change anything and uses up precious energy. This time next week you should have a plan for the next step.
It's good that you are travelling with a friend and have had some good advice on how to get to the hospital in as stress-free a way as possible. I have to travel to the next city to see my Rheumatologist and go by bus and train, after struggling in traffic when I decided I could drive there. Parking at hospitals can be very difficult too.
We will be thinking of you on Monday. I hope the team will be kind and compassionate. They must be used to seeing patients who are scared and I hope they treat you well.
Sending virtual hugs (that's what the 'o' is below!)
Bless you Rugger, I am so pleased I reached out to this community for support and practical advice. I’m starting to get my head round the appointment now but was struggling with the logistics. Factoring in my fatigue is a huge part of planning any activity, and stress is just another demand on my lazy adrenals. I shall be glad when it is all over, xx
I agree with PmroI wouldn't be continuing to taper with all those curve balls and yes if you're having to do something that's making you anxious I would increase the pred a little .Follow the protocol that's recommended. 👌 🙂Good luck.
Hi Raewynne, I’m not sure what the recommended protocol is for anxiety in anticipation. My one positive achievement while all has been falling apart around me has been to taper the pred, I feel that there is so little I can do about the rest. I was at 5mg in March before all the unexpected findings and just carried on with my own plan A. I haven’t had any alternative advice or treatment plans yet, maybe the Neurosurgery team will change that on Monday. Thankyou for your support xx
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