Advice on natural meds

[Maxine42]

Hi all ...My names Maxine . just after some advice on any natural medicines ..I'm 50 in July so apparently young to have developed pmr. I'm following a anti inflammatory diet ..well trying my best.. I just feel all doctors want to do is give me drugs.. iv managed to stop pregabalin and now they want to pump me with steroids ... which don't agree with me anyway ... any info anyone has will be appreciated

[jinasc]

Maxine

I looked at your profile and the date you joined is Sept 2015............so what have you been doing since 2015. This is your first post. A little bit more information would help. If you are unsure just click on my Avatar.

[Maxine42 in reply to jinasc]

I have just been on nerve pain drugs amitripline pregabalin ... and to be honest just getting more depressed. I had my spine operation in 2015 .. bur gradually just got worse.. Then the muscle aches started ..to be honest I just have been getting on with it.. test after test . Lately once iv stopped pregablin 900 ml.. iv been able to start thinking for myself again .. as for what iv been doing ..the answer is nothing ..I don't really go out .. the lockdown was just normal to me as my life didn't change ..depression really got me ..after seeing consultant Thursday I just feel I have something now I can work towards and try to help myself .. steroids have no effect on my body apart from making me want to sleep.. thats about all I have at the moment ..I'm just looking to help myself now

[Seacat30 in reply to Maxine42]

So sorry Maxine. No ideas to offer but sending gentle hugs xxx

[PMRpro Ambassador in reply to Maxine42]

You mean that the pred you have been given isn;t dealing with the pain? Either it isn't PMR or you are not on high enough a dose. There are no natural substitutes for pred in PMR - you can usually find options to reduce the impact of the pred side effects but nothing will deal with the inflammation as pred does, And unmanaged PMR is thought to be 7 times more likely to progress to GCA than well managed PMR. GCA is the big sibling from PMR and is a serious form of vasculitis that if untreated is likely to result in permanent loss of vision, either partial or total.

Pregabalin is useless in PMR - it isn't a nerve problem. It is a vasculitis and inflammation.

If you go to the FAQs - link beneath your post at the top of the thread - you will find a lot of information about PMR and living with it. Then you can ask more focussed questions which someone will try to help with. Many people ask the same question, some try to manage without pred but most give in in the end and take pred because there really are no successful alternatives.

[Sunny465 in reply to Maxine42]

I hope you are able to find some options and relief.

I can say that while it was thought to be PMR for me, I had a hunch that something was amiss mechanically.

Have you received rehabilitation regarding the mechanics of mobilizing pre or post-op.? The side effects of reduced movement could make things worse.

Basic principles for addressing injury/trauma/recovery or a disability could be helpful. Identifying muscles that need to fire/activate specifically to support the back and joints and to prevent referred pain is possible ie these are the glutes and core.

When it all turns to custard in my experience those features of body mechanics left unattended left me with referred pain/inflammation/poor muscle hydration/poor blood flow and nerve inflammation/irritation and seemingly an inability to move without huge pain and suffering thought to be PMR and put on Pred.

Improvement was gradual. Choosing the correct assistance took a while.

I began this journey in 2017. Much better now, as now my mechanical difficulties had been identified. Came off pred 2019 CRP normal, Not considered to be PMR. Most likely a combination of factors. All best.

[Sunny465 in reply to Sunny465]

PS, I go to classes that offer a range of motion + transfer of weight to improve balance, hydrate the joints and gently work the muscles and tendons. As old compensations are being challenged it has to be better than no results at all.

[SnazzyD]

Hello,50 is the starting age range for this condition and some get it a bit younger. If it is PMR steroids are the best thing to avoid damage. If there was a remedy that was as good and reliable until you go into remission, we would be flocking to get it. What dose have you been taking daily and for how long so far? Which side effects trouble you? I know you mention being sleepy, I had that so took them at night.

[Viv54 in reply to SnazzyD]

Hi, SnazzyD, sorry for butting in , im having a terrible time with fatigue atm , plus im tired all day ! Did it help you taking them at night rather than in the morning ? Im just worried it would stop me sleeping.Im on 7.5 of pred and having a really tough time tapering. TIA.

[SnazzyD in reply to Viv54]

Probably not. I was meaning to take it at bedtime at higher doses if Pred makes one feel groggy for the first few hours. At 7.5mg you are likely to be suffering from low adrenal function which is not the same issue. I had the same when I got to about that dose, I couldn’t wake up in the morning and felt tired all the time. At this level you need to start making some of your own natural cortisol to make up for what isn’t coming in the form of Pred. 7.5mg is also a still a bit high so the adrenal glands are still a bit suppressed. I found it a horrible no man’s land. Once you get into adrenal territory Endocrinologists like you to take it in the morning to try to mimic the natural rhythm of your cortisol production. The only way I found to deal with this was to keep reducing 0.5mg very slowly over weeks and avoid challenging the body. Even a trip to the supermarket was too much until my adrenal glands started to work. The only way they will get the message is by going lower and by 5mg I felt a real improvement.

[Viv54 in reply to SnazzyD]

Thanks so much, yes it's an awful place to be ! I'm having a zoom call with an Endocrinologist next week, I'm not really sure how he's going to help me or what I need to ask him. ?I've been taking my pred about 3 in the morning, going to try it in the morning. I can take it at any time as I have insomnia! Thanks for your reply.

[SnazzyD in reply to Viv54]

Not at this stage because if you had your adrenal function tested it would likely be a bit rubbish. This is why they like to do things like Synacthen testing under 5mg. Mine wouldn’t do it above 4mg and then repeated it at 1.5mg. I felt rubbish all the time but with reducing and resting a lot it got better. There’s no magic short cut I’m afraid.

[Maxine42]

But as I said my body reacts badly to the pred...my face swells like iv had a stroke and iv been between 2 mls and 20 mls ... I'm usually in bed for 5 days after just exhausted ..then back to square one again..

[DorsetLady PMRGCAuk volunteer in reply to Maxine42]

Think your doctor needs to do a bit more investigation - firstly “is it really PMR?”

What symptoms did you have initially to give that diagnosis? ..and if Pred doesn’t seem to help at all even at 20mg, like PMRpro has queried I would be querying that diagnosis.

Putting weight on around face is a common side effect of Pred, but what do mean “you look like you’ve had a stroke”?

There are other illnesses that mimic PMR -

Maybe have a look at this -

medicalnewstoday.com/articl...

[Maxine42 in reply to DorsetLady]

Well the consultant Thursday after many tests diagnosed it as PMR... he doesn't think it's rumatoid arthritis as my joints are not to bad at the moment... swelling muscle aches like flu symptoms ..stiffness ..throbbing aches is my main complaint..but after the scan he was more focused on all the inflammation around the joints

[Seacat30 in reply to Maxine42]

I presume that he looked for rheumatoid factor in your blood tests although it not being there doesn't prove that you don't have it. It might have shown up first in your hands and feet though. Are they OK? I believe that Fibromyalgia causes both pain and exhaustion. Has that been considered?

[Maxine42 in reply to Seacat30]

Yes .. but diagnosed PMR... I had never heard of the condition .. I just can't tolerate the steroids so I don't know which direction to go.. so was just asking for any advice ...

[PMRpro Ambassador in reply to Maxine42]

Did he comment on where the inflammation was? In the attachments of the soft tissue would be typical of PMR.

[Maxine42]

Yes showed me on the scan results.. I just feel like which ever way I turn it causes more problems ..

[piglette]

I know two homeopaths who have had PMR and both gave in and used steroids in the end.

[Maxine42]

Oh ok thank you all for the advice really appreciated

[agingfeminist]

If it is PMR then you must stop the inflammation...it causes pain and damage...only steroids can do that. Most of us get a swollen face...and redistribution of fat...but it disappears on lower doses ...not a reason to stop taking steroids. You can stop eating carbs so that you don't put on weight. Don't add salt to your diet so that you reduce fluid retention. Yes steroids have side effects but you can limit them...and as the dose goes down they disappear. Of course, it isn't a simple or smooth journey. People on here will be with you every step of the way. You have a disease that can be treated, please don't walk away from the only treatment there is.

[Bridge31]

I have a friend of a friend who says she manages her PMR with CDB oil.I very much doubt she actually has PMR.

[piglette in reply to Bridge31]

I think I agree with you.

[Maxine42]

Thank you.. I have more bloods next week .. its not that my face swells it drops one side ..and my eye closes .. I will take aĺl advice given.. I'd never heard of PMR so it was all abit of a shock...thank u again for your reply

[Seacat30 in reply to Maxine42]

I am not sure that a one sided eye/facial droop sounds like a symptom of PMR or taking prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to Seacat30]

sounds more like Bell's Palsy to me....bit odd as steroids can be used to help it...

[Maxine42 in reply to DorsetLady]

Bells palsy doesn't just come on after a dose of steroids though does it and then just go

[DorsetLady PMRGCAuk volunteer in reply to Maxine42]

No it doesn’t, my late hubby had it… no idea really why it came on, but it lasted about 6-9 months in total gradually getting better as things returned to normal.

I can understand your anxiety about it, wish I had an answer for you,

[Seacat30 in reply to DorsetLady]

I believe that Bell's Palsy has been associated with Covid and the Covid vaccines. I did wonder whether Maxine had Long Covid?

[DorsetLady PMRGCAuk volunteer in reply to Seacat30]

Maybe, but as she said it doesn’t come and go…..that makes it sound like a reaction to the steroids…new one on me!

[Maxine42]

Only happens after steroids ..

[DorsetLady PMRGCAuk volunteer in reply to Maxine42]

Very odd….

[Maxine42]

This is why I was asking for any other help.. but obviously there is nothing .. so I will just put up with it.. seems to go after about 5 days or so .. but as you can probably tell I'm worried that the higher the dose I have what will happen.. less of two evils ..

[Seacat30]

Most of us take steroids to reduce inflammation, reduce pain and relax stiffness. Could your face droop be a very odd form of relaxation of your facial muscles?

[Maxine42]

No not normally .. my eyes are pretty much the same... the consultant just said its my bodys reaction ...20 mls helped slightly with stiffness and aches ..so as u can imagine I'm worried about the increase if consultant suggests it

[piglette in reply to Maxine42]

Myasthenia gravis, another autoimmune disease, can cause muscle weakness in one or both eyes and a change in facial expression.

[Maxine42]

Oh really ..but usually I'm fine ..its onlybsince starting treatment for PMR .

[piglette in reply to Maxine42]

It may just be coincidental. Myasthenia gravis is difficult to diagnose like PMR. I am not sure how knowledgable GPs are on it. There is a blood test, but it does not always come up positive.

[Maxine42]

I'm seeing a rumatoid professor so hopefully I will get to the bottom of it.. but thank you any advice really appreciated

[SpydaV]

I'm not sure whether this would help, but we found Dr Terry Wahl's book "The Wahl's Protocol" to be very helpful for my husband's GCA recovery. He did also take the prescibed steroids but we made changes to diet at the same time and he stopped the steroids 13 months after diagnoses.

[Maxine42]

I have a look thank u ..up now at 4.30 am in pain 😢

[Pmrhiker]

Hi Maxine, I developed PMR after the Covid vaccine last year, until then I was totally healthy and very active at 62. Unlike most on this site I opted not to go the prednisone route. As a retired nurse I know the ravages that long term steroid use can have on your body. I opted to take routine NSAIDS (ibuprofen), and yes I know these have their own side effects, but they are much more manageable and personally I feel less prevalent and dangerous. Again, this is my personal choice. I am at a point now that I only take the ibuprofen twice a day, I use a compression massager twice a day, am and pm, and plain old Bengay when I need it. For a while I was using the Bengay a couple of times a day and taking the ibuprofen 3-4 times a day routinely, along with the compression massager as I needed it throughout the day. I’ve been able to start exercising and hiking again, although I’m taking it slow. I’m not advising this route for anyone, this is just what has worked for me.

[Maxine42]

That's is brilliant ...I know there's so many side effects to everything ....Ur doing Brill well done ....

So good to hear other people's experiences..x