Advice : Hi All Hope you are all well. Last week was... - NRAS

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Kazwilks profile image
18 Replies

Hi All

Hope you are all well. Last week was the worst ever had a major flare up. Managed to get to hospital for my blood monitoring. The consultant came in to see me anyway to cut a long story short he has upped methotrexate to 22.5mg and also back up to 15mg daily of steroid. My husband was reluctant to leave me on the Friday but he was playing in a poker tournament so I said just go I'll be fine. He got talking to some of the lads he told them about what was happening with me. One of the blokes suggested cannabis because I don't smoke he said they do it in all forms oil based or cream. He told my husband his mother had rheumatoid athritis for 20 years. All the medication she was on did nothing. He researched cannabis and and concocted his own remedy. He said his mother passed away aged 85 and lived the rest of her days pain free. I am seriously thinking about trying it he reassured my husband what he makes does not make you feel spaced out or anything nasty. He has loads of customers all suffering in different ways who he supplies to on a regular basis and each one feels tons better. What does anyone think would love to hear your opinion x

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Kazwilks profile image
Kazwilks
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18 Replies
JacquiThomas999 profile image
JacquiThomas999

I have heard about cannabis from my brother. I haven't tried it. In the UK there is no such thing as medical cannabis, so you would be taking an illegal drug. However, saying that I seem to remember that some health food shops sell a version that is legal, but you don't smoke it.

I think the choice is yours, but I wonder if being stoned will actually help anyone with day to day tasks. It certainly won't stop RA from attacking your body.

Sorry for the high horse answer.

Jacqui

Kazwilks profile image
Kazwilks in reply to JacquiThomas999

No I don't think it's a high horse answer but after the week I've had I am willing to try anything that might help. Wednesday last week I could of quite easily took a full bottle of co- codamol without a moments hesitation. I am sick and tired of my whole body hurting. All my rheumatologist wants to do Is ply me with more tablets which are not working.

JacquiThomas999 profile image
JacquiThomas999 in reply to Kazwilks

Oh for that magic wand to magic this away.

I know how you feel. I am just coming out of a massive sulk. I got back to work and was going great. Then I was given a bus that others also have problems with and I am off sick for a month. No idea where the money is coming from, and can't do anything at home as it is my shoulders. The only plus side is that I don't have young children to care for.

Sending hugs.

Jacqui

Kazwilks profile image
Kazwilks in reply to JacquiThomas999

I lost my job on the 23rd December. I worked with adults with severe disabilities. I was unable to do my job because mine to is in my shoulders and wrists. I was pretty fortunate in that I got full pay when I was off work. I'm hoping now it will go down the early retirement due to ill health but it's a long process. Hopefully it will be sorted soon it might take some of the pressure off because that's definitely not helping apparently you can have flare ups when your stressed

Barb66 profile image
Barb66 in reply to JacquiThomas999

You can buy legally CBD cannabis oil you smoke with a vape pen on line and ai think in health food shops. It's the active component of cannabis that is supposed to help with pain, but doesn't get you high. My friend with fibromyalgia swears by it.

THC is the 'high' component of cannabis. I wouldn't buy cannabis from dealer though. I'm with Jacqui on this one - it's illegal, you can only smoke and eat it and you'd be high all day and next to useless 😂

AgedCrone profile image
AgedCrone

I reckon if you are'nt getting any relief from the drugs you are being prescribed I'd try anything.

Let us know how you get in.

Is it appropriate to say "Peace Kazwilks"?

For you youngsters that is what they said in Haight Ashbury, San Francisco

in the 1960's!

Kazwilks profile image
Kazwilks in reply to AgedCrone

Thanks for the reply agedcrone that's my motto as well I will try anything to be rid of this pain. Peace be with you x

Eiram50 profile image
Eiram50

I totally understand where you're coming from. I can remember some Of my worst days, when all I wanted to do was jump out of my skin!

However, I'm with jacqui on this one - it would be you choosing to take an illicit drug but more than this, your husband "got talking to some of the lads?" I'm not sure how credible or trustworthy the source sounds? You wouldn't and couldn't be certain what it was you were taking, surely?

I'm afraid I'd caution you against it - but that's just my opinion. Like I say, I really do understand where you're coming from. However, maybe it's best talking things through with your rheumatologist once again. As we all know, it's really trial and error where treatment is concerned and can sometimes take a long while to find the right coctail of meds that actually make a positive difference to us.

Whatever you decide, I wish you the very best and hope there's some relief for you soon.

Marie.

Kazwilks profile image
Kazwilks in reply to Eiram50

Thanks for your reply Marie. I would be cautious I've never had any drugs my entire life. This disease has got me so far on the bottom I could literally end it tomorrow. I just feel the rheumatologist is not listening to me. I've been on methotrexate now for over a year as well as steroids which I hasten to add I hate taking. Surely I should be getting some ease I've told him it's spreading to all of my body. My right shoulder was damaged a few year ago now I can hardly move it. My grandson who is 2 cannot understand why nana can't pick him up. Most of the people on here seem to be getting by with different drugs etc biologics are supposed to be really effective but my GP said they were very expensive hence they are used as a last resort. So to cut a long story short Hun despite paying our NI for most of our lives we are receiving only the basic treatment not a treatment that is going to work.

Eiram50 profile image
Eiram50 in reply to Kazwilks

That sounds awful and you're right, seems unfair that treatment should be decided upon on budget rather than need. Can you seek a second opinion or look at changing your rhuemy ? No one should be suffering in the way you are when their are so many other options out there currently.

I honestly wish you well in this journey and I do understand- it's a journey that can take you to the point of losing your mind. Please take care of yourself .

Marie

Thegreywitch profile image
Thegreywitch

You can get cannabis oil from Holland and barrat at £20 for 10ml. It will NOT make you high as it dosnt contain that componant. I personally have had good results with turmeric with added black pepper. I am awaiting biologics and am in constain pain at the moment. Hope your more comfortable soon.

Kazwilks profile image
Kazwilks in reply to Thegreywitch

Thanks for your reply. I really wish he would change my meds I've heard so much about these biologics but apparently they are really expensive they will only give you them as a last resort

Thegreywitch profile image
Thegreywitch in reply to Kazwilks

I'm going on biologics as the methotrexate made me so sick, but on methotrexate virtually all the pain and stiffness went away, it took a while to kick in but it was brilliant apart from the sickness. I was just unlucky.

Eiram50 profile image
Eiram50 in reply to Kazwilks

Biologics are good but they're not the miracle cure for all. A lot of people still require additional stuff (Mtx) whilst taking biologics. I'm going into my third biologic and am now on 25 Mtx too. Even with biologics, it's safe to say it is not a one fit all thing and people Respond to them differently.

It sounds like a better treatment plan is needed to support you and I would shout as loud and as often to ensure you're heard.

Best wishes

Gnarli profile image
Gnarli

When you are feeling that awful you must be tempted to try anything. I agree with previous posters that the legitimate way has to be the way to go. Apart from the risks of taking something illegal that could leave you high as a kite there is no way of ensuring the constituents of what you're getting from "a friend of a friend" are what you thought you were getting.

nomoreheels profile image
nomoreheels

We've had quite a few discussions on this subject but I recall one particular one which may be a helpful read. I'm pretty sure the OP won't mind giving the link to it as it wasn't locked. I think overall it's a good representation of thoughts on it's use for RD healthunlocked.com/nras/pos...

One thing I would like to add is should you decide it may help you be very careful where you source it from. I don't think it should be a substitute for RD meds though used alongside as a form of pain relief I feel it may be helpful for some.

Richgirl profile image
Richgirl

Hello Kazwilks, I too have been told the same thing. I have just started putting Cannabis oil under my tounge. I don't know if it works yet, as I just started doing it. But for sure I know that eliminating certain foods from my diet has helped me a great deal. A lot!! Everyone's body reacts differently to different foods so u just have to listen to your body after u have had things to eat to see how u feel. I hope this helps u. Good luck with the Cannabis too. Richgirl🌻

19351939 profile image
19351939

I was on Methotrexate for only 4 months and developed bronchitis and pneumonia - then was put on Arava which made my liver enzymes go extremely high. Now taking only Advil occasionally but taking CBD oil twice a day morning and night. I take it with a dropper and am taking 6 drops under the tongue - hold for 90 seconds and swallow - this allows for better absorption and don't drink or eat anything for at least 30 minutes. This has .03 THC in it which does not affect you in any way - there is also CBD oil which is THC free but I prefer to take the full spectrum as I have read it has better healing properties. It is legal in all 50 states. This is helping me so much I had to share. Hope it will help someone else.

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