Trying to get off all these nasty meds! - PMRGCAuk

PMRGCAuk

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Trying to get off all these nasty meds!

scarlettanne
scarlettanne

Hi. I'm new to this forum so here goes..... I was diagnosed with PMR 10 years ago and put on Steroids and 3 years ago, Methotrexate. Side effects have been horrendous! To make a long story short and less boring, I am now down to 1mg Prednisone and 15mg Methotrexate. I have been taking CBD oil for the last 5 weeks and feel at least 60% better. Very little pain and much less stiffness. Sounds strange but just to be able to turn my head around is AMAZING! No stiff neck! I think my consultant will go mad when I tell her about the CBD oil (I get it from a very reputable lady in the U.K) and especially when I tell her I have weaned myself down from the meds she recommended. Anyone in the same boat?

34 Replies
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PMRpro
PMRproAmbassador

How can she complain if you have reduced the pred to 1mg? That is the idea - or didn't she tell you that? All of us on the forum are trying to reduce the pred dose slowly - and to eventually get off it once the underlying cause of the symptoms we call PMR has burnt out and gone into remission. Many people succeed sooner or later though 4 or 5 years isn't unusual and some of us take longer.

I took methotrexate for 4 weeks recently - and refuse to take any more! The side effects simply were not worth it to maybe reduce the pred dose by a couple of mg. Luckily the rheumy agreed - not that I would have cared if he hadn't!

Beware of just stopping the mtx suddenly though - it may be doing more than you think and just stopping it (which you can) may result in a flare of symptoms.

I would love to see a clinical trial of CBD oil as a steroid sparer. I'd be in the queue to try!

scarlettanne
scarlettanne in reply to PMRpro

Hi PMRpro. The reason I think she will not be pleased is because the consultants here in Ireland do not approve of replacing pharma meds for CBD oil. When I mentioned to her about a year ago that I was thinking of using it she was quite cross and asked me if I was there to take her advice or do my own thing. I also think that 10 years on steroids is just far too long. I was just asking people on here what they thought. Maybe what I should have asked was, is anybody on this forum using CBD in place of the pharma meds.

PMRpro
PMRproAmbassador in reply to scarlettanne

Um - I wouldn't tell her!!! What she doesn't know won't hurt her.

If you use the search box at the top right and type in CBD you will get a list of all the previous posts about it. Some people haven't found any benefit except possibly sleeping better - but everyone is different. If it works for you - happy days.

scarlettanne
scarlettanne in reply to PMRpro

Thanks, will try it.

scarlettanne
scarlettanne in reply to PMRpro

Just a thought PMRpro. CBD comes in different strengths from H&B 2% to Love Hemp 40% to the one I use 77%. So RESEARCH is key! All the best on your journey.

PMRpro
PMRproAmbassador in reply to scarlettanne

I don't live in the UK - no H&B here! And the stuff is majorly expensive here - not even sure who would have it,

I am in Ireland - have you been attending the same Consultant for your whole 10 years?

Yes, because they are so expensive and we have a huge shortage of consultants here.

Zampalion
Zampalion in reply to PMRpro

I reached zero pred. After 5 years in March started mtx 2years ago 8 mgs per week now reducing 1mgs every 3 months still not sure what effect they did for my pmr, now on 3mgs of warfarin forA.F.. Still at least I am off the steroids

I'm new to PMR - have been taking 15mg pred now for 3 weeks and 4 hours... not that I'm counting! :) The pain disappeared quickly, apart from stiffness and some pain in my hands in the mornings. For the last few days, though, there has been no pain at all. I started taking CBD capsules 5 days ago, so maybe that's why. I'm taking CBD in addition to the pred - hopefully it will help me come off pred a bit faster. Fingers crossed!

It sounds as though the CBD oil is really helping you. If your consultant is so against it, do you have to tell her?

PMRpro
PMRproAmbassador in reply to MhairiP

There is some evidence that CBD oil can act as a steroid-sparer - i.e. it means you may get a bigger effect from the same dose. But no-one knows really.

HeronNS
HeronNS in reply to MhairiP

I've tried a number of things (aloe vera, ginger, general changes in diet, low level light therapy). I would say that some have helped with the symptoms but I do not believe any of them have made a bit of difference to the duration of the disease, which in my case is slightly over three years now. In some cases I think the symptoms of actual PMR have been helped (low level light therapy, possibly ginger) and in others it is probably the withdrawal symptoms which were helped (aloe vera and, again, possibly ginger). I make an evening cup of ginger tea with freshly ground ginger root. It does seem to help, but whether it's withdrawal symptoms or actual PMR activity I don't know. The aloe vera seemed to help at one point, but when I tried it again after a flare it made no difference, so that's why I suspect it was initially helping only with withdrawal. Ginger root is a lot cheaper than cannabidiol.

MhairiP
MhairiP in reply to HeronNS

Interesting! I eat a lot of fresh ginger and fresh turmeric so hopefully both of these will be helping. I've also started taking a turmeric/curcumin supplement.

scarlettanne
scarlettanne in reply to MhairiP

You know MhairiP, maybe not.

Contrary to what others have said, you really shouldn't hide any supplements or drugs you're taking from your doctor. It's just not smart.

The doctor works for you, not the other way around. "Doctor's orders" are really suggestions, whether they like it our not. Listen to shat they have to say, do your research, and beware of being pulled in by some Dr. Google snake oil salesman.

Your body, your decision. Just be wise about what you do and don't do.

Thanks GG but have been researching this for almost 2 years now and belong to a group of people who suffer from all kinds of conditions. I try to follow their progress on CBD oil and the effects it has on their individual conditions. Only buy my oil from very reputable supplier. Just wanting to get off all pharma meds and their side effects. Hope you're keeping well.

Longtimer
Longtimer in reply to GOOD_GRIEF

Doctor works for you.......sadly not all of us have found that, and have to find out own relief......

Scarlett Anne, ( spell check). If anything made me feel 60% better, I would be inclined to stick with it. Big Pharma does not like what it can’t control.

Thank you Jane. I will but it's very expensive. Have you tried CBD oil yourself?

Hi Scarlett Anne

Glad the CBD oil is helping you. How do you take it? recently bought some oil to try and have not been very consistent due to the taste of the oil so I can’t can’t tell much yet. Do you take it with meals? It seems to put me off food because of the taste.

scarlettanne
scarlettanne in reply to Mstiles

Totally understand. The taste is awful! However, the one I take is water soluble and I can take it with cold/warm drinks and food. Really helps. Just check if yours is water soluble. Good luck!

CBD is helping me on my PMR journey but I can't say for sure because I have other problems. All I know is that in the 14 months I have taken it I have gone from 30mg a day to 11mg so far with no flare. My rheumy knows all about what I am doing as does my gp and I must be very lucky as they both support me.

Like PMRPro I wish they would do clinical trials but until the big pharma work out how they can make huge sums of money from it, afraid it just won't happen!

Right. Just ordered it from Holland and Bassett. The Americans and South Africans are convinced and I have two friends who say it’s made a difference. Will tell the Rheumatologist when I see him in September he is pretty relaxed about everything.

If it even touches the sides of the pain it’s worth a go.🥂

Holland & Barrett brand is very weak. Only 2% CBD. Try Love Hemp. 40% CBD. Very expensive but worth it. However, I get mine from a lady in the U.K who makes her own and cured her own cancer. High CBD of 77%. Can't discuss this here but you might just want to join similar group on FB. Good luck!

Having read all this I’m thinking of jumping on the CBD bandwagon! I’m in UK so are there different strengths /doses I should be looking for? I’m only on Pred and top up paracetamol and take vit D,C and omega 3s. Thanks.

scarlettanne
scarlettanne in reply to Lochy

Research, research, research! Some CBD oils are very weak. Good luck! I have not looked back.

The percentage and dosages to get sufficient CBD are so confusing to me, hard to figure out. Math is not a talent of mine. And I live in California, you’d think we’d have it all figured out here!

In Canada we are preparing for country-wide legalization of recreational marijuana and all of the products associated with it. Currently you can get a medical prescription for both marijuana and CBD oil (of various strengths). Many dispensaries have popped up already making it easier to obtain CBD oil. There are also some marijuana strains that claim to combat inflammation, chronic pain, insomnia, etc (all symptoms that us PMR sufferers deal with). I believe with that these changes in legislation in Canada will propel the country into becoming a source for "medical tourism". As already stated, the important next step is to research the actual effectiveness of the products to gain legitimacy and efficacy. CBD oil could very well become the next "big pharma" product.

Of note, when I asked my rheumatologist about CBD oil she shut me right down saying that it has side effects (I asked what they were, and compared them to Pred side effects), and she said that everyone is always slamming big pharma, but no one is critically reviewing the CBD oil which is unregulated currently. Well.......that ended that discussion promptly and closed the door for further exploration. Shame! I am open to new treatments for PMR, there has to be something out there other than (or in addition to) Pred.

Well PMRCanada, you see I think that the GPs and Rheumies are ignorant about CBD oils and such so they can only practice what they have been taught. Also I have been told that there are 'perks' involved in recommending certain Pharma meds to their patients. Of course, tried and tested meds. 'If you keep doing what you've always done, you'll keep getting what you've always got' ( I think that's how it goes) Well, it doesn't cut ice with me anymore. I'm not prepared to put up with the horrendous side effects of those meds for one minute more. I'm feeling so much better on my CBD oils.

Kind regards.

Glad the CBD oils are working for you!

HeronNS
HeronNS in reply to PMRCanada

I think the situation in Canada is interesting and evolving. Unfortunately I'm not so sure that legalizing recreational cannabis is going to help medical users. I already perceive that it may become more difficult if independent dispensaries are shut down and the government is in the business of selling recreational bud, with all the tax money which comes with it. It will depend a lot on which province you're in, and I personally think it should be a federal responsibility so there is some clarity and consistency across the country. In Nova Scotia, for example, the government went directly against the recommendation of the feds and our cannabis will be sold by the liquor commission through separate facilities attached to some of our liquor stores. Very doubtful there will be much competent medical advice offered through those facilities. They are very much appearing to be prepared to treat it as a drug of vice, like alcohol and tobacco, but there seems to be zero conversation about easier access for people like myself who only want the health benefits CBD may provide and are not interested in a buzz. On the other hand it looks like the new Ontario government is adopting a much more lax and hands off attitude, and that could have some advantages, but will it help medical users?

PMRCanada
PMRCanada in reply to HeronNS

The outcomes remain to be seen. Very interesting indeed given the different provinces’ protocols. Medical epertise about symptoms, strains, and researched products is still needed for sure.

Many folks are only interested in relief from their debilitating symptoms, not a head high. We’ll see if CBD oil can get gain some legitimacy and research traction amidst all the legalization hoopla.

HeronNS
HeronNS in reply to PMRCanada

I actually can't understand why I can't go to my nearest pharmacy to get CBD, perhaps with a doctor's prescription if that's deemed wise.

PMRCanada
PMRCanada in reply to HeronNS

Me either?? I hear you, and have heard from others wanting the same thing.

I know of someone who has a medical marijuana prescription (not CBD oil) to aid them with PTSD and severe insomnia, and I was very impressed with the level of screening, information and care they received, involving their primary physician in the process. They received a number of consultations with recommendations (that were changed a few times until they found a product that worked best), assistance filling prescription online, and then having it delivered right to their door. Better than having to even go to the pharmacy at all!

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