Finishing Prednisone : Hi All, I haven’t posted on... - PMRGCAuk

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Finishing Prednisone

misschris
misschris

Hi All,

I haven’t posted on here for a long while. I was put on 30mg Prednisone May 2017, I have tapered down 1mg a month as advised with hardly any problems but I do did find once I got to 7mg a day that I would feel a bit achey for over a week and then it would subside, once I got to 7mg I then started tapering by half for a month until I got to 1mg, I had my last dose of 1mg on the 8/3/19 a couple of days later I did feel bit achey but I put that down to how my body has deals with tapering but today I am finding myself a bit stiff and not being able to to walk around for long or walk upstairs without feeling stiff, I did just want to go from 1mg to 1/2 mg as I had been tapering by 1/2 but my gp said no that I should be finished with them. If it gets worse I do not want to go back on prednisone again, I recently had my bloods done and there is no inflammation in my body, I am also taking Levothyroxine as I had a total thyroidecomy in 2009.

I am thinking if it gets no worse than this that I may try CBD oil. Has anyone gone down this route and had a positive experience.

61 Replies
oldestnewest

CBD oil is a funny thing. Some people have great success with it and others don't. I guess it all depends on the individual body. I have been trying it for about 6 months and I just don't see any difference in pain level. I have been taking about 30mg daily.

Hope it works for you.

misschris
misschris in reply to Linny3

I can only try...hopefully I don’t have to go back on them steroids. Is 30mg the most you can take in a day?

Linny3
Linny3 in reply to misschris

I really don't think they know how much to take. Every time I ask I get a different answer. I was on 15mg and not seeing any results so I went to 30 mg. I do know I was told to keep taking them as they need to be in the system for weeks before any results may be seen.

It is all so new, but everyone is different. All you can do is see what happens.

Good luck

PMRpro
PMRproAmbassador in reply to Linny3

If you mean pred they do NOT need to be in the system for weeks, particularly in the case of PMR. In fact, PMR is characteristic in responding in hours to a moderate dose of pred - took less than 6 hours for me and there are several on the forum with similar experiences. In fact, if there is no good response to 20-25mg in a week or two then the idea that it could be PMR may need revision.

Soraya_PMR
Soraya_PMR in reply to PMRpro

I think it’s a discussion about CBD oil, not pred.

misschris
misschris in reply to Soraya_PMR

It was a discussion about CBD I was just wondering if anyone who was taking it while suffering with PMR and if was effective.

I just didn’t want to have to go back on a high dose if my symptoms get worse, I will see my GP next week and ask to go back on 1mg daily as I am having symptoms again.

Blearyeyed
Blearyeyed in reply to PMRpro

Unlike CBD oil which has not had extensive testing for most diseases as yet , and any therapeutic use it may have in those that it can help is still in early days of investigation and so there is no consistent advice on how much to take or how long it will take to work. Or if it may end up having side effects from long term use otherwise not noted in small scale studies.

I don’t think that some doctors “ get” the delicate precision of tapering. I also think that we forget the true horror of PMR pain and just remember the downsides of Prednisalone.

Did you ever have a good Rheumatologist ?

Unfortunately other conditions develop at a pace whilst we are dealing with PMR/GCA and pain/ stiffness can stem from Osteoarthritis for instance. I know that my Rheumatologist wants me to take Methotrexate. She suspects Psoriatic Arthritis. I find this beyond depressing as I thought that I was reaching the end of a finite pain journey.

It feels like being sent back to go without collecting £200. I am currently languishing in the jail of denial. ( Monopoly).

Rose54
Rose54 in reply to SheffieldJane

Hello cell mate

Maybe we need a big prison to accommodate us all

I never had a Rheumatologist. My GP sent me to a haematologist who found that I had PMR, put me on the prednisone and left my GP to look after me.

So sorry SJ , keep your chin up xxx

Oh lummy! Not the dreaded Monopoly! For me PMG symptoms are very specific - round the neck and shoulders. As I taper I note occasional knee twinges, stiffnesses and leg lock which I put down to being 73. Psoriatic Arthritis sounds scary! Good luck!

Hi Jane. I know how you feel. This time last year I was on 9 mg plus mx and felt ok. I stopped the mx in January because I was thinking it maybe wasn’t doing anything, 3 weeks later I had a bad flare. I’ve still not really recovered and can hardly move my neck at the moment. When I think that I have had pmr since 2013 I feel really down. I’m still on the same dose (10mg) that I was then. I feel so out of control. Take care.

Yes snap Sue. I feel like I’ve lost the plot. Differing medical opinions don’t help. The penguin walk is back and yet upping my dose feels contrary to advice from my Rheumie with the low Adrenal function complication. May we both pass through this stagnant phase 🙏 soon.

I do hope so Jane. I’ve made an appointment for Bowen therapy next Thursday. I’ll let you know how I get on. Fell as if I’m clutching at straws. X

🤞🏻💛

Hidden
Hidden

The problem is that markers often lag behind. If you are getting your familiar PMR symptoms then you really need to monitor and not discount it yet. If I had the pred to go go down by 0.5mg I would have done that as you know how your body responds.

As regards cbd oil. It's like any supplement as far as I can see. Good reports from some, no change from others and a couple of friends felt worse (not PMR but a/I including hypothyroidism). Years ago for fibromylgia I did take cannabinoid for pain and it worked in the sense I didn't care that I hurt. Sadly cbd doesn't have the THC that caused that feeling!

My GP wouldn’t give me a supply of prednisone so that I could taper from 1mg to 1/2.

I will give the CBD a go and see if it helps, hopefully this won’t get any worse and I won’t need to take anymore steroids or even CBD.

PMRpro
PMRproAmbassador

If you use the search function (if it is working) at the top right and type in CBD you will get a list of all past posts on the topic.

You wouldn't be the first to find that 1mg/day is enough to keep the inflammation under control but that stopping it altogether allowed the tiny bit of inflammation that was being created to build up until it was enough to cause symptoms. And if that happens - eventually it will reach a level as bad as it was originally. Would you REALLY refuse to start pred again? I wouldn't.

misschris
misschris in reply to PMRpro

I wouldn’t refuse it because it gave me my life back but it’s not a very good drug to take with all the side effects. I would try to go down the CBD route and if that doesn’t work I would take it but not as high a dose as I first started.

PMRpro
PMRproAmbassador in reply to misschris

Most of the so-called pred side effects can be mitigated or avoided with a degree of discipline. But what makes you think there are no adverse effects to CBD or any other substances that are in a position to be effective? One person's side effects are another person's desired effects from any substance.

And if your GP "only goes by the book" - perhaps you need to remind them that PMR hasn't read the book. This is biology and medicine, not physics and engineering which obey rules.

misschris
misschris in reply to PMRpro

As with any medication wether prescribed or off the counter, we all take chances with our health when we take anything. I developed a heart murmur when taking preds and had investigations....I knew it was the preds and when it lowered my heart returned to normal, they were going to put me on hearts meds, my blood pressure went very high, once again it was the preds, they wanted to put me on blood pressure tabs, I suffered terribly with sweating profusely, they wanted to put me on antidepressants, this time it was the brand of preds that caused that, I had other side effects too, so if I’d of listened to them, I would of been rattling with all the other meds but I refused them and had to ride it out In hope that things would get better and they did.

As with CBD I wouldn’t know if I would have side effects until I tried it and if I did at least I wouldn’t have to take it again like I had to with the preds, I had to ride it out with them and refused to take the meds they wanted to put me on.

I would be happy to go back to 1mg but am still hopeful that it is my body just adjusting to no preds. My gp are hard to convince that your having symptoms, especially if bloods come back normal, as we know normal isn't for everyone but my gp think one size fits all.

When I started on the pred journey my doctor actually told me that some of her patients keep a supply of 1 mg tablets on hand just in case they need them. It seems like the taper can't just end as we would like it to, but we still need a little bit, perhaps not every day but at gradually lengthening intervals, for quite a long time.

My GP goes by the book...end of. Won’t think outside the box, I bet if I would of been under a Rheumatologist they would of let me taper 1/2 a day.

Blearyeyed
Blearyeyed in reply to misschris

I have a feeling if you told your GP you were feeling pain in a way that you know you cannot cope without pain relief for a little while longer and are considering using CBD oil instead they would be willing to have second thoughts on allowing you a few months more of gentle tapering from 1mg to 1/2 to 0.

The use of steroids for the short time longer should not concern you either. The good thing about Pred is you know it works and you can tell you GP again that your slow taper was working too .

Letting them know you are using tried and tested advice from other sufferers and a PMR support group on how to finish your tapering journey , and , don't want to get onto the road were you are substituting one form of pain relief for another , and then finally having the pain build up again to a point that inflammation would rise and you would have to go back to a higher dose should be enough to convince a sensible GP that you are making a educated decision.

Are you also sure that the new pain and stiffness is PMR related?

There is the possibility that it could have another cause for the pain , like withdrawal , neuropathy , or another issue that needs checking for , and some other pain medication or neuropathic physio sessions may help .

Choosing CBD oil is of course up to you , you sound very determined that you want to try it.

I will say a word of caution though. CBD has not had alot of consistent research or systematic positive results for most types of pain or rheumatic disorders. Debates that I have also read on the forum have consistently shown that if it was PMR pain people were dealing with CBD made little if no difference to people's pain and they found that it had been expensive without the results they wanted.

Also , by taking the time to experiment with a new drug ,instead of trying to tackle your GPs reluctance, you may be extending the time that your pain and stiffness continues and still end up having to go back on a higher dose of steroids again instead of being able to go back to 1mg ( or not much more) and finish your taper alot quicker.

It's alot to consider , and if you want to try to the slow taper and your GP is still reluctant you would be better off seeking a second opinion so you get support from a doctor who understands they must work with you , but ultimately it your right to decide what is right for you.

misschris
misschris in reply to Blearyeyed

I agree about seeing my GP about prescribing me 1mg of prednisone and see how that is, I don’t mind doing that, I just don’t want to be getting bad and having to go up on a high dose again.

Hidden
Hidden in reply to misschris

I know of a couple of people who just couldn't get below 1mg and just stayed there. I am also sure I read on here that some prominent rheumies recommend 1mg maintenance dose. It so rubbish your Dr so by the book. Surely medicine thrives by learning from patients as well as books and regulations!

misschris
misschris in reply to Hidden

It’s scary that they do go by the book and not the symptoms. I am going to go back and fight my corner...if they refuse I will ask them to refer me to a rheumie.

I'm using CBD oil during the day and at night . For the first few weeks I was taking small amounts building up the dose and didn't think it was making any difference at all and very nearly nearly stopped taking it. However I'm now up to 6 drops under the tongue 3 times a day and have noticed a difference , mainly with fatigue and sleeping . I need to take tramadol and paracetamol with my pred in the morning and then I use sativa oil at lunch time and again at about 5 pm. If I forget to take my first sativa dose or I don't have it with me my body usually tells me because the fatigue hits me and I think it makes a small difference to my pain levels . I use the indica oils at night to help me sleep and if I wake up in the night I take some more and I usually drift off to sleep again . I'm still on 15 mg pred ( down from 30 mg October 2018) and my PMR is still very active .

I think it's worth a try but remember that the sativa oils are energising ( day time use ) and the indica oils are relaxing so only use them at night .

misschris
misschris in reply to katiemills

Thank you for your sharing your experience on using CBD, there is so much to learn about it...I suffer with ibs and I believe it is also good for that, oh to feel normal again would be nice 😄

Blearyeyed
Blearyeyed in reply to misschris

I have controlled my IBS for years with daily turmeric ( without black pepper) , only one capsule , probiotic yoghurt and green tea and buscopan only when symptoms are more severe.

If you are not on PPI stomach medications or another drug that you can't take turmeric with it is worth trying for gastric issues .

misschris
misschris in reply to Blearyeyed

I am on antacids but am going to start wearing myself off them. I do drink tumeric tea and was going to make it myself as I have organic tumeric powder...can you not take tumeric while on meds for acid reflux?. I do drink actimel and sometimes probiotic yogurts, I just recently bought Acidophilus for the gut but haven’t started them yet.

Blearyeyed
Blearyeyed in reply to misschris

They don't recommend using turmeric with PPI drugs , things Omeprazole etc. and there are some blood pressure / heart medications and some other health issues that they advise you keep away from spices like ginger , black pepper and chilli that can also be inflamed instead of eased with turmeric in high doses .

misschris
misschris in reply to Blearyeyed

Weird how you have mentioned tumeric and ginger. I have been really bloated lately more than normal (which is under investigation) yesterday I started drinking tumeric tea with honey (not home made) and also chewing on a piece of ginger 3 times yesterday and my tummy is still bloated but doesn’t have that horrible feeling, I don’t get painful cramps, I can go from Diarrhea to Constipation but it doesn’t usually last as long as it has this time and the mebervine doesn’t seem to be doing anything.

Blearyeyed
Blearyeyed in reply to misschris

There is a post called Turmeric that someone did a few weeks ago which I put more information on.

You do need to remember to begin on one capsule ( turmeric only) not the two recommended and at the lower doses first because otherwise it can cause Diarrhea when you first take it.

I actually only have one a day unless my symptoms are playing up or I have constipation . Like drugs too you need to give supplements and food combos time to work. You may not notice the benefits for a month.

I know for the IBS now though that if I run out of turmeric and think I will not bother within a few days I have to increase the buscopan again , and the gastric reflux gets worse because of the IBS.

misschris
misschris in reply to Blearyeyed

I will look for that post. I haven’t considered the tumeric capsules yet as I wanted to try and incorporate tumeric tea, ginger into my daily diet and cut out the nasty foods, cakes, sweets, crisps etc 😢😢

Pippah45
Pippah45 in reply to misschris

I mentioned that I was taking Turmeric (among other things for inflammation) yesterday to the lovely Rheumy I saw and she said great that I was doing everything for inflammation. I love the Turmeric teas and the Kefirs too.

Surely you should see a Rheumy for ongoing care - I wouldn't want just to be diagnosed on haematology and managed by a GP. My Rheumy had different ideas about tapering the Prednisolone to the GP too. You deserve an expert in the right field - and I hope you are entitled to one! Good Luck.

I am going to throw another thing out there too - for donkeys years I have been treated with ant - acids that had little or no effect but I joined a forum supporting people with thyroid problems and it seems there are a lot of us that actually have low stomach acids and the symptoms are the same! I saw a colon consultant a few weeks ago and he had never heard of low stomach acid. However my symptoms have been greatly improved by taking a product called Betaine HCL at the end of meals. That forum were a bit gobsmacked that my man hadn't heard of it - with a sweeping "every one has high stomach acid"! All you have to do is try one pill mid meal and if it gives a reflux (which goes almost instantly) it isn't what you need. Please research it thoroughly - but I do know a lot of people on that forum have at last found relief - as have I.

Blearyeyed
Blearyeyed in reply to Pippah45

Definitely true that everyone needs to get a balance of stomach acid and bacteria in their but not get rid of it entirely. You need acids to digest your food.

The kefir is good for antacid and definitely the probiotic yoghurt with the pills, and a little portion just before a meal , but again the word of caution like with turmeric or ginger is that if you have to take the PPI or end up getting meds for ulcers , BP , heart and some of issues you have to be careful you may have to stop using them( that is that after trying other options you have harm in the stomach from not taking them ) .

Having more smaller portions during a day instead of three big ones and a drink of water before eating and bed also help acid reflux. Also sleeping on the appropriate side or having your body gradually raised at the head end stop acid from the gut passing upwards and causing night time gastric reflux. One of the main reasons people without long term stomach illnesses have gastric reflux is the size of their meals and the way they sleep .

misschris
misschris in reply to Pippah45

I will try that with the antacids am sure I seen something on the thyroid uk site about a home test you can do to check your levels, if am not mistaken I think it was to do with bicarbonated soda, need to check this on the forum. I probably don’t need to use them as much and do need to wean off them.

The turmeric sounds good 👌 I have been having pukka turmeric tea but I do have organic turmeric and should really make my own tea.

misschris
misschris in reply to Blearyeyed

I’ve never tried buscopan, my gp has given me mebervine tablets.

Blearyeyed
Blearyeyed in reply to misschris

I had that medication at one point , was then on buscopan three times a day but as I made some changes in diet and meal sizes and added in the turmeric etc. that reduced to once a day . Sometimes I don't have it at all for a while when I am not suffering the cramps and bloating but I do use the turmeric then.

Luckily , I haven't had to go back onto Omeprazole either despite being on Pred and other drugs as the probiotic yoghurt with honey seems to solve my gastric reflux and haven't had new stomach issues as yet that have meant I needed to take them again.

misschris
misschris in reply to Blearyeyed

I’ve been taking omerprazole since I had my thyroid removed, tried to come off them and then got PRM and was told I had to take them while taking the preds, so now am going to wean off them.

Blearyeyed
Blearyeyed in reply to misschris

Yes if you do decide to come off them , just like any drug or supplement you need to taper off them.

When you are off them , as long as it doesn't affect any of your other medications , ginger tea is good if you have bloating or IBS symptoms at night too. I like the Pukka 3 ginger that is a combo of ginger , turmeric and ginseng.

Making sure you take Omega 3 also helps with repair but removing Omega 6 foods and not using that as a supplement is good for pain issues as it is a proinflammatory.

misschris
misschris in reply to Blearyeyed

I use pukka but I have the tumeric gold with lemon and I add the honey. I have bought omega 3 will start them today.

Noosat
Noosat in reply to misschris

I am down to 2.5mg from 20mg., and started taking CBD oil about a week ago, 3 times a day. Have gradually felt some better. Maybe it is the oil, maybe not. However, I will continue to use it.

misschris
misschris in reply to Noosat

Hopefully it will help you wean off the preds with little or no aches or stiffness...Goodluck!

Hi, I am still on 4mg for GCA but I have a lot of pain and stiffness every morning and the Endocrinologist i saw yesterday said that the Pred weakens muscles which is why I can comfortably kneel without pain but can't push myself up. Maybe you are still suffering the effects of the Pred on your muscles. I imagine it takes a while for our bodies to recover from pred when we finish with it.

misschris
misschris in reply to Hellyowl

I am the same, find it really difficult to get up if I have been on my knees but I had that before I had PMR. I noticed it once my thyroid was removed, I have hardly any strength in my thighs.

If it means that I had to stay on 1mg daily I would be ok with that, just don’t want to start all over again on high does...too many side effects that I don’t want to have to go through again 😥

Blearyeyed
Blearyeyed in reply to misschris

Have you been given any suggestions about pain relief for neuropathy because of muscle weakness from both steroid use and thyroid issues.

It may be that you need some pain relief now but of a different sort , and the GP may be able to help with that.

Hellyowl
Hellyowl in reply to Blearyeyed

Hi. I won't use pain relief other than paracetamol as I have never found one without side effects. I use Pilates stretches, warm shower and a slow dog walk. I also started going to the gym and doing resistance work. What it is doing is meaning that the first thing in the morning is bad but I getter better quicker as the day progresses. I do my Pilates and gym evening or late afternoon when I am better. I have come to the conclusion upping the steroids is only going to drag out the muscle weakness for longer

Blearyeyed
Blearyeyed in reply to Hellyowl

You are definitely doing a good job of fending off the loss of muscle strength and reducing the threat of any future muscle weakness aches and pains with your philosophy to exercise .

Don't exercise too much though and get a rest day after a big session or have had a full or busy / stressful day just in case you bring on warning pain or a mini flare .

You are clued up so you know having a diet packed full of vitamins and minerals ( and a good supplement) will also help maintain that muscle and nerve health.

Be careful with the gym as well , keep away from the weights or over extension exercises , the running machine is best avoided and anything that does not give support to your joints or puts extended pressure on them . xx

Hellyowl
Hellyowl in reply to Blearyeyed

Hi. Thanks for the tips. I dont exercise at weekends apart from going for a walk. Really lazy at weekends. That's when I refuel

Noosat
Noosat in reply to Hellyowl

Yes, I am down to 2.5 and feel the same as you do. Early mornings are the worst. I sometimes wonder if I need to increase the prednisone, but after a cup of coffee, my morning pills think, "this isn't so bad," Really want to avoid going back up on the prednisone, if possible, I am trying to strengthen leg muscles with walking. Some days I do better than others, but determined to keep on trying. Also do a few mild exercises at home and stretches. :)

Hellyowl
Hellyowl in reply to Noosat

I just get on with it too. By 11:00am I am getting my life back. I hope that when I am pred free I can build up my streghnth again. This is my aim. On the plus side I get a gym discount because of my age.

I have never complained about my weak thighs, I have just got on with it, they don’t bother me unless I have to kneel down, maybe I should inform gp about it.

Hidden
Hidden in reply to misschris

I think you need to make a list of the niggles you have, identify the ones that could impact your life if they aren't managed. As bee says, it maybe that some of the issues require different meds, or even referral to physio. It's a pain but sometimes you have to be a bit of a nuisance to the Dr to get what you NEED.

Hellyowl
Hellyowl in reply to misschris

The endocrinologist said painful this was the pred

I should really have a heart to heart with my gp, there is one out of the three that has some compassion so I think I will book in with her.

Has any one ever asked for a gym or exercise class on prescription. Just occurred to me because Endo was pleased I exercised and I pay for mine. Made me think if it is so important maybe we can get it free

Hidden
Hidden in reply to Hellyowl

There used to be a community programs in my town where you got a referral for 3mths free swimming and exercise in several council pools and gyms. I had it 2 or 3 times but haven't checked for a while. Search community health program or similar online.

Hidden
Hidden in reply to Hellyowl

This part of the nice guidance. There is a pdf file for review in 2018.

nice.org.uk/guidance/ph54/r...

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