THE ROCKY ROAD UNDER 5mg ?

[Flutterbies57]

Hello, this is my first post on this site. I've had PMR for 5 years. I am finally getting down to 2.5mg, but for the last few months , my health has been erratic. I am soooo confused. I just saw the 'rocky road under 5mg' mentioned, I think, on Snappy's post. Can anyone give me a basic list of weird health problems you have all experienced when getting down low on prednisone ? Is there light at the end of the tunnel ? I don't know of course if all my new problems are anything to do with pmr and pred, or whether I am on the slippery slope downwards for other reasons. Every day is a different day, healthwise.

[SheffieldJane]

Abnormal fatigue mostly. I also had my Adrenal Function tested at this stage and again at 3 mgs. The test is a Synacthen Test looking at potential functionality as Pred is no longer supplying all the body’s Cortisol needs.

[Janstr in reply to SheffieldJane]

Did you have a test at 5mg?

[Gaz227 in reply to SheffieldJane]

I have been trying to get a Synacthen Test For over 18 months my Rhuemy said there is no point why I can’t get a straight answer out of him , as soon as I get to 3.5mg everything goes pear shaped muscle and joint pain fatigue gut ache . I am back at 4.5mg sore in the joints but stable , he wants me to go on MTX but not till after the co-vid has been sorted or we have a vaccine which I can understand , but if my adrenals aren’t working properly after 5 years on pred surely the MTX would be a waste of time also as a steroid sparer , so confused .

[SnazzyD in reply to Gaz227]

Tricky. Might be that there is some other inflammatory condition in the picture eg RA , in which case MTX would be worth a try. If it is a flare of your PMR that is held off by a sub 5mg dose, then why add in and strong immunosuppressant now that can affect the bone marrow amongst others? However, it does seem to some docs that Pred is the pill of all evil and no other medication however potent could possibly be as bad. Why is there no point in the Synacthen test? Is it that they believe your symptoms can be in no way be adrenal insufficiency? Or that even if they are, it can’t possibly be the case?

[Gaz227 in reply to SnazzyD]

I think he believes there is other issues not just PMR but he is sitting on the fence , I think if it is RA which I have had the tests for which came back negative , the concern is what is happening to my joints as if it’s not treated correctly the damage will be irreversible . I am concerned about trying MTX like you say the side effects can be worse than the disease for some . Sappho syndrome keeps getting mentioned as I have a lot of chest (Sternum area) and clavicle pain but none of its other symptoms, Costochondritis was excluded as it has been there for nearly 3 years . Frustrated is an under statement

[PMRpro Ambassador in reply to Gaz227]

Who did what tests to say it isn't RA?

"Negative" RA tests (I assume it was the anti-ccp test that was done) do not mean it isn't RA - you can have sero-negative RA.

[Gaz227 in reply to PMRpro]

I asked that very same question he said as there is no swelling or heat on my joints it’s not RA .

The bloods he did where ESR , CRP , ANA and CCP all came back normal

He is still convinced it’s Sappho Syndrome. Albeit I only have one aspect of its acronym . I read you need to have 2 aspects for it to be diagnosed and I told him that but he dismissed it .

[Gaz227 in reply to Gaz227]

He also told me not to have any surgery on my clavicles Which was being planned before latest co-bid restrictions , till I have tried MTX for at least 6 months , as he thinks That could clear up on D-Mards

[PMRpro Ambassador in reply to Gaz227]

I think I would be looking for a second opinion - from someone who doesn't think PMR is beneath them,

You think you might notice if you had all the bits of Sappho ...

[Gaz227 in reply to PMRpro]

Yes I agree , after researching it I have to say I hope I don’t get the other symptoms if it turns out to be that . But MTX treats so many conditions like Pred. I guess I would never actually know what the condition is . Complete minefield , the Rhuemy is convinced I’m better off long term on MTX then Pred, but I guess that depends on how your body copes with it .

[Flutterbies57 in reply to SheffieldJane]

Thankyou for your reply Jane. I mentioned this test to my Dr, but she has not heard of it, but is enquiring. My fatigue is getting worse.

[Constance13]

Flutterbies, it might help if we had a bit more information about you. What health issues you are particularly having, what other medicines you are on, etc etc.

Please give us more info also on your profile. It needn't be much but it is easier for us to help you if we know the 'background' of your journey with PMR.

Welcome and regards from Constance. 🍀🍀

[Flutterbies57 in reply to Constance13]

Thankyou Constance for your reply. I have now put my past health history on my profile.

In the last few months I have deteriorated. My main new problems are occassional lapses in my joints. Knees particularly feel like they are collapsing under me , but it happens so quickly then 'grabs' again so I have not actually fallen, but I do feel very insecure. With ankles I do have to stand one legged and exercise them a little to get them working properly. New gut problems have arisen occassionally, but did put me in hospital twice as they had all the signs of a heart attack. No real diagnosis has been made due to Covid interruptions. The problem I am most concerned about is a rapid decline in my memory. My husband and I were deteriorating at a similar rate, but in the last few weeks I feel like I am fading fast. I also suffered a couple weeks of real brain 'fuzz'. I could not concentrate on anything at all, whether I enjoyed it or not, but then one day, that passed and I was back to my usual. My blood pressure was never regularly checked in the past (because it wasn't a problem)???, but it was checked , and was high recently. I was sent home with a machine for a week, which was fun to play with , but I hope the machine was broken. Pressure was high for a couple of days, normal for one, then low for a couple more days then high again. And very different in both arms once. I did discover tho that a glass of wine was not detrimental to my blood pressure.

Is brain fog and memory an issue sometimes when we get down to low doses of pred ?

[Constance13 in reply to Flutterbies57]

With PMR most of us seem to be between a rock and a hard place - sooo difficult to cope with.

Your symptoms (all of them) are typical. One of the most difficult is realising, from now on - and for several years - our life will be/is different. Accepting this takes a lot of courage.

I have had PMR for 8 1/2 years now - down to 4 mg. Have had several tries to get below - all failed. My doctor has informed me I will most probably be on pred for life.

I have the same problem with knees and ankles suddenly giving way. I dare not go out alone and always use a rollator (walker) outside.

I wish you luck and hope "acceptance" will help you in the future. Worrying won't/doesn't help (I used to do a lot of it)😏. I have now settled into a cocoon and spoil myself as much as I can. Easy to do with an understanding/very helpful husband.

Be kind to yourself!

All the best from Constance. 💐💐

[Flutterbies57 in reply to Constance13]

Thankyou Constance. I am lucky too, to have a husband who is still here, helping me out. Acceptance is a big thing. I did ok for about four and a half years, but then I had a toxic, non believer Dr. I used to get my support from Patient site, but it changed too, so I felt like my support was gone. I am so pleased I was given the name of this site,

[Constance13 in reply to Flutterbies57]

Thought I remembered you! Keep trying - you'll get there. 🍀🍀

[Flutterbies57 in reply to Constance13]

Constance, lovely to 'see' you again. This site is amazing , I am so impressed with it so far.

[PMRpro Ambassador in reply to Flutterbies57]

Got an email this morning that they are changing the security again - the forum is just about dead so I keep mentioning here

[Constance13 in reply to PMRpro]

Ooooer - more changes? Each time I get used to things 'they' (so call) 'update' it. 😟😟

[PMRpro Ambassador in reply to Constance13]

It seems to be a new "secure word" they ask you to then insert certain letters as a second level of access security. Like is used in bank access. For a FORUM? For the other stuff they do for GP practices and so on yes - but for the chats?

[Constance13 in reply to PMRpro]

Quite!

[Flutterbies57 in reply to Constance13]

I had not been on it for so long, and was so frustrated trying to use it again, then Patients wonderfur Eileen gave me this site. What a difference

[Constance13 in reply to Flutterbies57]

What we'd all do without Eileen (PMRpro now) I don't know.

[Flutterbies57 in reply to PMRpro]

Quick question - PMRpro - are they professionals ? This is an amazingly easy site to use.

[PMRpro Ambassador in reply to Flutterbies57]

Who? HealthUnlocked or patient.info? HU has had its moments but nothing to compare to patient at present!

patient.info was set up some years ago (1996) by a couple of doctors in the north of England as a source of reliable founded information for doctors. At the same sort of time they started forums for patient discussion and information for patients. Over the last several years it has had revamps and with each one it has been harder to use or just plain didn't work - I maintain because they outsourced the work to people who don't understand the end-user needs when it comes to patients. They are generally either older or sick or both - but these are bright young things who have used digital platforms since they were children and what for them is intuitive isn't for everyone else. The purpose of the patient platform itself has also changed somewhat and has been expanded - I would say they have tried to do too much for too many different groups. They should have kept the patient forums separate if they really did want tp keep on with them. Though to be honest - I'm not sure they really do. That isn't the impression they create - they have never asked us first or when they did ask us nothing we said was listened to and when they asked us after the even they might as well not have bothered,

patient.info/about-us

I wasn't sure of the history of HU - wiki says "HealthUnlocked was founded in 2010 by Jorge Armanet (CEO) and Dr Matt Jameson Evans (Chief Medical Officer), to transform how information and data are used and treated in healthcare and support people with health conditions to connect together online." so the same sort of origin and also in the UK but it was more a social network as far as I can tell.

en.wikipedia.org/wiki/Healt....

I have to say that the EMIS moderator at patient,info is outstanding and for a long time he alone was there for any questions until they brought in a lot of new and inexperienced moderators who got a bit trigger happy! Alan is still there - a good bit of continuity but he is overworked and now relatively a much smaller cog than he had been. HU struggles with continuity - you are given a contact for something and a few months later they have disappeared without a word, even when we were acting as the moderators. Patient is very strict about what is allowed or not, especially internet links without persmission, though some things have changed there too. HU seems unwieldly about catching trolling and spamming - patient is very good there.

So yes - all professionals but HU is still developing - who knows what will happen next.

[Arflane97G]

Am tapering down from 5 mg 0.5 mg at a t time, now at 1.5 mg. have experienced severe fatigue (afternoon naps sort that out), some stiffness (warm bath and walks) and irritability and short temper - long suffering husband patiently bears the brunt! My feeling is that this is just something I have to get through as my body adjusts. Good luck with your tapering

[Flutterbies57 in reply to Arflane97G]

Thankyou for your reply. I am going down to 2.5mg. I am similar to you, severe fatigue, stiffening up quite quickly (no pain), short temper and irritability have got a little worse. That has been a problem since I started Pred, but I think it is getting worse. Husband is in the same boat as yours. I think maybe its is 'anxiety' or something kicking in too. Really rapid (recent) memory loss is scaring me.

[SnazzyD]

It would be better to have more detail of your history. People who have been around this a long time, may spot an issue or pattern you may not have, which will be more useful that a pick and mix list of symptoms, which believe me, are many and varied.

[Flutterbies57 in reply to SnazzyD]

Thanks Snazzy for your reply. I believe it was one of your posts I read, which I related to, and I might have referred to you as Snappy not Snazzy. I apologise for that. For all my aches and pains and weird health problems, the problem which is scaring me the most is my fairly recent, rapid decline in memory, which then brings on another new problem .... anxiety I think. I have now put my health history on my profile. I have put my new probs on my answer to Constance. I have probably forgotten some tho. I do hope this has something to do with 2,5mgs of pred and can easily be fixed.

[SnazzyD in reply to Flutterbies57]

My memory has taken a bashing and sometimes I cannot believe that 3.5 years ago I was working like I was. At low doses of Pred my short term memory was very unreliable, but it did improve with time, though not to where it was. Anxiety and low mood were also a feature that improved as my function came back on line.

[PMRpro Ambassador]

Hi - and welcome over here!

As others have said - knowing more about what you think might be problems will make it easier than people saying what they may have found.

Remember that once you are below 5mg you are getting closer to what may be a longerterm dose - you aren't reducing relentlessly to zero, you want the lowest effective dose that gives the same relief from symptoms as the starting dose did. And that is combined with being at a dose where your adrenal function needs to chip in a bit to top up the steroid level to what your body needs to function and inititally that is going to be a bit hit and miss.

That then means that if you are under added stress of any sort - unwell, need to do more, emotional or mental stress - the daily pred dose may not be enough to manage that as well as the PMR and you inevitably feel ropey as a result. And let's face it - there isn't one of us who could say they aren't under stress at present!

[Flutterbies57 in reply to PMRpro]

Thankyou for your reply. I certainly agree with your last sentence. We probably cannot comprehend exactly what you are all going through over there. We have only had a brief window into that so far, but we check daily to see if life is improving for you, and we hope for the best. I guess I should go check with Dr Google too as I do not understand some of the tests and things mentioned on this site. 'Ropey' is a word I have not heard for a long time. I am definitely in the ropey basket ! I guess we are all trying to muddle along by ourselves to some extent at the moment as Medical are so overrun with more major problems.

[pammy_hyland]

I have never got down to 3mgs without severe fatigue and my levels go up high .. I've tried and tried but now I'm on a maintenance dose of 4 mg and have been for a couple of years and that is the way I will stay as life is good and even climbed Snowdon on that and life is so hard and not worth living without..Thats my choice and that's where I will stay xx

[Flutterbies57 in reply to pammy_hyland]

I have just got beyond the bearable stage recently and have to look at why I have. I am beginning to think that I was soooo focused on getting off pred, that I would not consider that it could be because of the low dose. A new scary decline in memory is making me look at all possibilities. As I am taking the time to read all of your wonderful replies, I am now relooking at my decline within the last few months , thru new eyes. Last year I was walking over stony roads in Patagonia with a suit case with wheels which were in worse condition than me. I was so impressed with what I could still do. Congratulation on climbing Snowden !

[Hidden]

I just dropped from 8 - 7mg today and I am feeling it already. Absolutely knackered and shaky. I did abandon the drop a few weeks ago and am trying again. I have just popped another Diazepam to, hopefully, straighten me out.

[HeronNS in reply to Hidden]

Are you using a dead slow taper? If you have pills that can be cut, try 7.5 instead of 8. It isn't, as we've often said, slow if it works!

[Flutterbies57 in reply to Hidden]

Neither can I David-swim that is ! Your sentence-absolutelyknackered and shaky- descibes me to a T at the moment. It is my first shaky moment though since my early days on pred.