Really surprised by the amount of self medication

I have only been on this site a few weeks and have taken time to read the many posts. I’m quite amazed by the amount of self medication that goes on. This seems particularly dangerous to me - just my opinion

[DorsetLady PMRGCAuk volunteer]

Most people who do it have been authorised by their doctors to do it, so long as they keep the GP/Rheumy informed…..and it’s usually the more experience patients.

We never suggest new patients self medicate - but it is a long term illness, and most patient get to know the signs when something is not right.

[PMRpro Ambassador]

I think you are possibly being misled by a small number of posts - if you mean self-medication in terms of pred dose.

You have to consider - over the past 2 years it has been practically impossible to see a doctor when you have ended up with a flare due to reducing the dose too fast, too far or in too big steps. Very few people are adjusting the dose by more than returning to the previous dose that worked except when they are using a short burst of pred to reverse a flare. That lasts a week. It is pretty difficult to change the dose much - supplies of pred prescriptions are monitored by the GP. And many of us have been on pred for a long time and work together with our doctors,

[piglette]

I must admit I did not understand your comment on self medication as I thought most people on this board were taking prescription medicines. What sort of self medication were you thinking of? I suppose lots of people with and without PMR take supplements like vitamin C etc.

[jinasc]

Welcome to the site that no-one ever wants or expects to join. I have read your profile and am sorry that your GP, A&E failed you and subsequently you went private.

You will learn on your journey that has just been diagnosed in Nov 2021 that nearly all the people that you refer to on 'self-medication' (I am presuming you mean Pred) nearly always, as advised, discuss this with their medics.

One size does not, unfortunately fits all - humans beings are different. They have different back grounds, childhoods, diets etc so medicine is dealt with on generalities. Statistics are fine but most of them are done on a 'Bell Curve' and the top middle is taken as the norm. The people who fall down on either side, are not in the normal heap.

Knowledge is power and some people on this site have been dealing with both PMR and GCA and have fought to get diagnosis and treatment changed and have been successful many times. The one most important is that suspected GCA is now treated as a medical emergency, just like a stroke or heart problem. Prior to that change, many people lost total or partial vision and once that happens it has gone forever. The age range when I got involved was late 60's onwards. We proved that it was really 50 onwards and the change was made. Patients devised slow tapering methods and researchers are now looking into them.

Auto-immune illnesses are very complicated and there are many (800 recorded Orphan Illnesses). Your body is attacking it self and it is most difficult to find the reason why.

15 years down the line, there is much more research being undertaken and progress, although slow, is being made.

Finally, I wish a safe journey with as few problems as possible and if you are very lucky you may just sail through it all. There are people who do sail through it, without too many complications. but we don't hear from them as they don't need to make contact.

One word of advice, please read the diagnosis and treatment of GCA, I say this just in case your medics have not told you what to watch out for.

However you know where we are if your want to ask any questions feel free.

[Gladrags in reply to jinasc]

Great reply! This business of PMR is very complex! Good luck!

[Kendrew]

As DL and Pro have already explained...nobody self medicates because all the different medications taken have to be prescribed by a GP or specialist in the first place. For many of us, as our condition progresses we become familiar with it's patterns of behaviour and begin to recognise with increasing accuracy what any emerging symptoms might be related to....for example, are we experiencing a flare or is it just withdrawal symptoms from a taper down from the previous dose.

This ability only comes through having lived with the condition for some time and no one would advocate that a newly diagnosed person should try and do this themselves.

With more and more knowledge & understanding gained as time goes on, some of us feel able to make certain judgements based on our own individual needs, but this is almost always with the GP/specialist's approval and based on sound advice and reliable information received.

Under these circumstances, it isn't always necessary to consult a medical professional and as we are the ones actually living and experiencing our disease, we are in the best position to decide how certain aspects of our condition are best managed. We all are routinely monitored and have regular blood tests but during the pandemic, these protocols have not always been readily accessible when required and this is when some people have requested support and advice here till they could get to see a medical practitioner. You will notice if you read the many relevant posts that it is always suggested that medical advice is ultimately sought from the GP or specialist though.

Those of us who have had reason to initiate an 'intervention' are all 'long timers' with knowledge and experience of the disease but no one would ever advocate that a newly diagnosed person should attempt to do the same.

[Koalajane]

My doctor told me that she thought I was capable of deciding when to taper or increase my dose. I am able to get blood tests to check my inflammation levels which are generally accurate to how much pain I am in

[Nextoneplease]

Hi, I wondered about this too when I first found this site. However, I realised that members of the forum are operating within a framework agreed by a GP or consultant, not least because prednisolone is a prescription only drug. I think the above posters explain it well. All the best to you x

[DorsetLady PMRGCAuk volunteer]

Yes it is - but the question and responses can still be seen by others.

[Daffodilia]

GP told me I was managing reduction of pred so I just tell him when unable to reduce when doing repeat prescription - down to 6 mg from 40 in Oct 2018

[Bridge31 in reply to Daffodilia]

A GP rang the other day ( I have no idea who he was ) to run through to the medications on my prescription list. At the end I asked him if he was happy for me to manage my own Pred.

He said “ Yep !”

Since I joined this practice I’ve requested 5mg, 2.5mg and 1mg packets and nothing has been queried, in fact there has been no interest in my PMR progress at all.

[Temeraire in reply to Bridge31]

Interesting. My GP practice never monitor me either. 4years left to myself. Only get a blood test if I ask for it. Not ideal but guess its better than being pushed to drop faster than I can.

[Bridge31 in reply to Temeraire]

I only get a blood test if I ask for it. The only time they called me in for one it was unrelated to PMR.

[borednow in reply to Bridge31]

Probably related to my GP ...........

[PMRpro Ambassador in reply to borednow]

What interests me is - if they never monitor their patients, how do they know if they are off pred? Because they obviously aren't checking long term prescriptions are they?

[borednow in reply to PMRpro]

Maybe they might just have a fleeting concern if patients stop asking for repeat prescriptions? But then, maybe not .......................... !!!!!

[PMRpro Ambassador in reply to borednow]

But would anyone notice?

[Bennijax in reply to PMRpro]

i don't think anyione might notice. My GP probably would, but if he left the surgery and another GP took over I doubt he or she would notice or be in contact with me until my annual check up was due.

[Nextoneplease in reply to PMRpro]

At our surgery, prescriptions are reviewed annually by a pharmacist employed for the purpose. Just had my review - she was interested in my blood pressure - asked me to take some readings at home - but simply took my word for my pred dosing, and renewed the prescription as I asked.

It seems GPs vary a lot in the interest they take. I’ve literally never seen ‘my’ GP about PMR. A locum diagnosed the PMR, and a rheumatologist the GCA. I request my own blood tests, through the GP eConsult, every 4-6 months along with bone health ones. In some ways I feel lucky to be allowed this independence, but sometimes I wish I had more GP /rheumatology support.

I agree with the rider on this site - amazing though the information and support is on here, it should not take the place of medical assessment.

[PMRpro Ambassador in reply to Nextoneplease]

It shouldn't, of course it shouldn't - but what does someone do when the GP is unavailable or claims they don't know or that the rheumy is responsible and you can't see them for 6 months - or even a year when it is cancelled as so often happens these days?

[Nextoneplease in reply to PMRpro]

100% agree - I’d be lost without this site and greatly appreciate the advice given. For example, I didn’t know whether to try to reduce from 12.5 before Christmas, but following a suggestion on here (yours I think), am now down to 11.5 😊

But GPs really shouldn’t assume we all have good support and/or can think things through…..

[Suffererc in reply to borednow]

That is awful. Don’t you ever feel the need for their advice. After all they, the GP is supposed to be in charge of your medication and your health

[Bridge31 in reply to Suffererc]

I don’t feel the need for their advice on PMR, no. I prefer to follow the advice of fellow PMR’s on here.

[Suffererc in reply to Bridge31]

Me too. I value this forum and always check here first b4 seeing GO. But …. My GP phones every 5/6 weeks to see how I am. Don’t always agree with her advice but at least she shows caring

[DorsetLady PMRGCAuk volunteer in reply to Bridge31]

Rider on all HU forum's -

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.

You may "follow" our advice, but your doctor needs to be aware and in agreement...after all s/he is the one signing your prescription. I know things are difficult during these Covid times...but you do need to keep them informed, which I'm sure you do...

[borednow in reply to Suffererc]

Apart from the initial diagnosis of PMR, my designated GP has been about as much use as a chocolate soldier! I am slowly (with the help of the Receptionists) transferring myself to another GP within the practice who is absolutely great. Just hoping my designated GP doesn't notice!!

[Daffodilia in reply to Bridge31]

My GP saved my life - had to move to him as not diagnosed elsewhere - he is interested but lets me manage dose of pred myself - when I failed to reduce last autumn he said try again when clocks go forward so I will - he says some people stay on pred - I think that is ok if a low dose - we have to be able to enjoy life. Blood tests won't show much if symptoms are controlled by pred I think. I always ask for blood test when Levothyroxine is reviewed once a year.

[humlies in reply to Bridge31]

Yes, I would say that our GPs have no interest at all in my PMR progress! I managed a recent flare by myself and am now on 3 mg pred, having started on 25 in August 2020.

[Retallack]

After a long conversation with my GP a year ago (I emailed her my pred reduction figures first) she is happy that I am capable of managing the pred dosage myself having educated myself through the internet and this wonderful PMR/GCA UK forum. As everyone else says "there is no one size fits all" and we all listen to our own bodies.

[Flivoless]

Think about it, your GP is giving you advice based on a text book and a handful (if that) of PMR sufferers. The people on here have the benefit of the real experience of thousands of sufferers over many years.

[Bennijax]

So it goes both ways. If the patient does't feel respected and cared about they will pull back and rely on others; if the doctor doesn't feel respected and nourished by that respect he or she may oull away.

[HeronNS]

Aaaannndd s/hes gone!

However, in the interests of contributing to this interesting discussion:

Never had a problem with either of the doctors I've had since diagnosis. Even told at outset, the very appointment where my diagnosis was confirmed, I would "have a lot of say" about how the treatment was managed.

[Nextoneplease in reply to HeronNS]

Interesting that the original poster threw a pebble into the pool and then disappeared as the ripples spread…..🤔

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Happens al too often - if they don’t like the first few replies. 😊

[Nextoneplease in reply to DorsetLady]

Yes - it’s a pity they went though because it’s been interesting 🤷‍♀️

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

True!

[Noosat]

This post somewhat surprises me. I actively participate in my health care. I look for second opinion on sites such as Mayo clinic, which sometimes has more information about the medication than the GP reveals. Just recently I rejected medication for bone density because research on Mayo plus other credible sites showed in would adversely affect 3 other existing conditions that I have. I would not advise anyone to blindly take "the pill"

[Bella1310]

Yes, I have been on here a year and a half and it has puzzled me how people seem to raise and lower their dosage of pred when needed. I live in France and my hubby has been on Pred for 18 months, starting at 70mg reducing to 5 now. There is no way I could "play" with his dosage, the Rheumy, GP and Pharmacy just won't allow this. I have to have a prescription for him to raise the dose as I simply wouldn't be able to get the drug. And they are strict with only a month supply as prescribed. Before Xmas he had a flare and I was fortunate to get hold of his Rheumy before she headed off on a 2 week holiday over Xmas. Our GP is very good I might add and insists on a monthly CrP blood test, but I worry a little. When I mentioned "Adrenalin insufficiency" last month, she looked at me as if I had two heads........Even though my husband's never ending fatigue is his nemesis. This is just a comment not a question, this group has undoubtably helped me over some tough times, and I thank all the people who have supported me.

[tangocharlie]

After 10 years of living with PMR I have got to know my body and its needs very well, to the extent where both my GP and rheumatologist say I know what is best for me at any particular time, so often I adjust my dose as necessary, but I always tell them. Other times if not sure I ask them what to do first before acting. So being flexible partly depends how knowledgeable you are and how long you have had PMR. The first few years I did exactly what I was told but with hindsight I should have queried it because the GP just went by a rapid fixed taper and I was under-dosed and in constant pain. I think I was his first case of PMR so he didn't really know what he was doing as he now admits. We all live and learn. It's not self-medicating as we have regular reviews, but nor is it micro-management, it's shared decision-making, which is how it should be as I am the one who has to live with this. In the past this forum has literally been a life-saver for me when doctors actually got things wrong, as can happen. Good luck with your own journey and I hope it all goes away soon.

[Bridge31]

I haven’t received any advice from any GP. Every time I request more Pred it is never queried

[DorsetLady PMRGCAuk volunteer]

When Bridge31 says “when I request more Pred”, I think she means her monthly repeat prescriptions rather than an increase in theI total amount of Pred.As least I hope so…

[Koalajane]

My diabetic nurse is also very knowledgeable about PMR, when I went for my diabetic review she looked at my bloods which were all very good. She said to me your ESR is 24 which the doctor had said was okay. She then said but looking back you are usually under 10. You are hurting aren’t you?I was very impressed. She was right and on her advice I upped my dose.

[anonmnor]

If you think this group self medicates too much, then I would suggest that you avoid the “methamphetamine” forum.