Autoimmune conditions and weightloss injections

[Mrsredlipstick]

I have Rheumatoid Arthritis, fibromialga and low thyroid. All medication is at high levels.
I have recently started Rituximab infusions every six months.
I have lost five stone over the last two years but still need to lose another four stone. Does anyone know if I can get these injections or is there a contraindication? My consultant wasn't keen but didn't give a reason other than just carry on eating less.

I’m not entirely sure how true this is - you’d have to do some research- but I’m in a lupus and Addisons group online (both autoimmune) and the consensus seems to be not to use them because they can cause malabsorption which can affect those of us who rely on medication to stay alive - and this can be permanent even after the jabs are stopped. I think it’s something to do with the way they slow the gut transition process down.

Wow, I’m sorry. That sounds tough.
I would be wary of anecdotal evidence and perhaps return to your consultant and ask further questions. Or even get a second opinion. They know the medication you’re on.

I have RA and systemic scleroderma and my consultant was hugely supportive of my decision to start on Mounjaro injections. I have lost three stone and can really feel the difference.
I had to buy them privately because my GP was a complete ar5ehole and ignoring the facts that I was previously on high dose of steroids; have limited mobility , and am on two other drugs that have weight gain as a side effect- decided that I was just 'lazy' and refused to back me
I need a knee replacement and know that they won't even consider me until Im a normal BMI

I have a different autoimmune disease (neurological) but my consultant was supportive of me trying them. I was warned though about unpleasant side effects common to all weight loss jabs e.g. bloating, wind etc.

I've been too chicken to start them but they are likely to help because of reducing inflammation. I really just need to pluck up my courage!

I use to have periods of steriod use and it really upped my weight. Once by three stone in there months.
I've not lost a pound since April. My consultant is skinny and rude. She told me I was still a big person! I eat half of what I used to and don't drink anymore.
I am fully disabled now and can only wfh and can't walk without aids. The expensive Rituximab has worked (as I was bedridden for 17 weeks) but getting the rest of this excess weight off could help my mobility. I can afford to pay.

I’m really sorry op. I had a shitty doc who, when I went to him in desperation told me to cut out fizzy drinks and would not listen that I didn’t drink them. There is a lot of ignorance.

I have fibromyalgia, underactive thyroid and take a medication that causes weight gain. I started last week so am only on the starting dose but have noticed a huge difference in my pain and stiffness, it appears from reading about the bonus effects that a lot of people have noticed a reduction in inflammation. I would honestly take it for that alone, plus I feel less anxious.

If you put your medications etc in when you order then I think the doctor will only prescribe if it’s suitable for you.

This is really helpful thanks as I'm just hovering over the 'buy' button online. (I have Fibromyalgia, EDS and a host of other conditions)

Typo

I have Fibro and RA too and on 2 different pain meds (as well as other conditions and meds that caused my weight gain). My MJ prescriber knows because I put everything down during consultation. My GP and NHS pharmacist also both know about me taking Mounjaro because we spoke about it during my med review at different times. GP was actually the one who mentioned GLP-1 before i started considering it. He just couldn't prescribe but could refer me to the NHS weight mgt and i didn't think it was necessary.

I had to up my other medication dose though because it seemed Mounjaro reduced their effect so they weren't helping as much pain-wise but I'm fine now.

I have rheumatoid arthritis, lupus, sjogrens & Hashimoto's thyroiditis. I also have diabetes and the diabetes consultant was happy to start me on Mounjaro. The max dose of Mounjaro that diabetes doctors are allowed to prescribe is 5mg, obesity specialists can prescribe up to 15mg, and the side effects tend to increase with the higher doses.

I read recently that Mounjaro decreases inflammation levels in the brain, liver, heart, and kidneys (which is one of the theories behind why it slows Alzheimer's disease). So I wouldn't be surprised if it is also behind the lupus in my leg hurting less since I increased the dose from 2.5 to 5mg.

I'm only on hydroxychloroquine and painkillers, so not in the same position as you, but with weight being such a factor I'd be inclined towards trying the lower doses of Mounjaro and seeing how you get on.

Any decent prescriber is going to go through your medical history before saying yes or no, so as long as you don't lie about it, you'll get an honest and qualified opinion.

I'd maybe pick a supplier which does face to face consultations as its complex but you've nothing to lose by asking. Ignore your twatty consultant - losing excess weight (if you safely can) can only benefit your health long term.

The only thing to watch is oral meds can be affected by the slower digestive action

Oh wow ladies. This is very encouraging.
I worried that if I have a relapse I'm still too heavy for carers (unless they're built like Arnie! )

I have Sjögrens and take hydroxychloroquine. I had BMI just over 30 and started Mounjaro in July through Voy. I listed all my meds and health conditions and was approved by the doctors there. I've had some gastric side effects but now these have settled. I've lost over 2.5 stone, definite improvement in IBS symptoms for me as well.

I feel that I need some help now as I am late fifties. My weight only went on after I developed RA (size 12, 180cm tall). So many drugs over the years have effected my weight.
Rituximab is a chemotherapy drug along with methotrexate. I take those plus pain killers and thyroxine.
I'm astonished the anti inflammatory benefits weren't flagged to me. With a RA factor of 817 prior to the new treatment I woukd have thought they'd chuck everything at it

I have fibromyalgia and RA and my rheumatologist was hugely supportive of me taking these meds especially when he could see a difference in me after only 2 jabs and nothing to do with weightloss. He says I seem to be in complete remission for the first time. I am on week 9 and have lost 22lbs. I plan on staying on a maintenance dose once I'm there as this is the best I've felt for a long time.

@Willowy1982 wow. That is amazing news. I am going to drop a line to the rheumatology consultant.

Hi, I have RA and have been on Mounjaro since early September. I take Sulphasalazine and Diclofenac for my RA. So far I've lost a stone, another to lose and the effect on my RA has been amazing. My regular blood tests show a two thirds reduction in inflammation and I haven't had a flare in 5 weeks. My goal is to put the disease into remission, which last happened 15 years ago at my goal weight. Definitely speak to your consultant, Mounjaro has been a game-changer for me. Good luck 🤞

I've just filled in the forms so I need to wait for approval.
Very excited to see if I can go back to looking like me.

I am on MJ and have hashimoto. I feel better on it for sure. I had heard that MJ helped with fibromyalgia so I suggested it to a friend that I knew suffered with fibromyalgia. She spoke to her Dr and consultant, had bloods done and was given the go ahead to try it. She said her fibromyalgia symptoms felt better from the first jab! I'd say it's worth trying for sure.

I have myositis and was on steroids, methotrexate, azathioprine and had a dose of Rituximab last year. I had put on a ridiculous amount of weight since falling ill mainly due to reduced mobility and steroids which I was struggling to shift. GPs were unhelpful so I just ordered mounjaro myself. I have lost roughly 2 1/2 stone and most importantly my inflammation (CK) levels are finally just near normal range (220) after being stuck at 1000-3000) for 2 years.

It maybe because of the drug or because I’m eating less processed food and sugar.

I'm so excited. I've been ill for decades. This year has been the worst. When I developed fibromaylgia I had to give up ft work and overseas travel. I have also looked awful for decades.

This thread is amazing.

I also had to give up work. Basically it was when the Pandemic started, but things were shit long before that. Since then my health has absolutely been in the gutter.

I've begged various HCPs for help with my weight recently. Rheumatology listened to my plea, added 'Obesity' to my list of diagnoses and discharged me. The nurse at me surgery snapped at me last month saying "you have three choices; Orlistat which will make you ill, weight loss injections which you won't get, or bariatric surgery" I could have cried or thumped her, there was no understanding, simply derision of yet another fat person sitting in front of her. What saddens me most is that these people know my weight is mostly caused and exacerbated by my health issues, meds and lack of mobility.

Anyway. I'm pleased in a way that it forced my hand. I've been dodging a wheelchair for so long (currently use crutches and can't walk far at all)

Day 3 on MJ (so obviously very early days) I'm walking easier, pain has disappeared overnight from my long term plantar fasciitis, and even the toothache I've had all month has gone (I am booked in for fillings in November) For me, this proves the point about MJ working on Inflammation within the body, but I'm genuinely surprised at the speed.

For the first time in a long time, I'm excited for the future, and can see light at the end of the tunnel. I didn't dare dream there was ever a possibility again of a life with less pain. As a single parent to a 12 year old, this is the difference between managing and not managing.

(I have EDS, Fibro, 3 types of arthritis, Asthma, many allergies, IBS and Urticaria)

@RainbowZebraWarrior oh my love it's heartbreaking isn't it.
I've been so ashamed of my body for years. I love clothes so I look alright but the pain this year from the RA and fibro has been life limiting (I nearly topped myself as I lost continence). I am f**king fuming that this had not been offered to me.
I have been a C-Suite executive for years, paying big tax then bang, no more mobility and no more big jobs. I am not ready to retire and I have an expensive med student DC.
I do have two friends that have diabetes and had the jabs for that. Both have lost significant weight. I've starved for nearly three years. One wasn't really that big but got a private prescription.
I just want to move better and dress with ease. I actually don't mind paying.

Sending a massive hug to you @Mrsredlipstick It's shite how the world views you once you are disabled and (moreso possibly) overnight. Because you see, it has to be seen as our fault doesn't it? That way, it will never happen to them (those thay judge)

I am also bloody seething that I haven't been offered this and I've had to find out for myself.

I also had a great career before falling off a cliff edge health wise.

Onwards and upwards. It does somewhat go to prove that our health is, indeed in our own hands. I've joined the October Starters MJ thread as I ordered my jab on Friday and it came Sat. No more fucking about waiting for anyone else to help me.

That all sounds a bit negative, but it's a battle cry really. And after battling everything I have for the past 4+ years, I'm more than happy to take on this challenge, as at least it likely has some significant benefit to my health at the end of it. I don't actually mind paying either. In fact, I think it may have made me feel more in control. no more begging the NHS for help

It all feels like a bit of an epiphany.

To be fair to the NHS, this drug hasn't been out long. It only came to the UK in Feb for weight loss and then later for diabetes. The research about the positive effects of these drugs have mainly been conducted by the US and really research is probably only starting. It's just so new so not all the positives are common knowledge yet. The UK might do it's own research into the benefits of the drugs before offering for things other than diabetes. At the moment I think it's still not available for obesity on the NHS, so will take a while before it is prescribed for things like fibromyalgia etc. In the US I think its prescribed mainly for obesity and diabetes, we are only learning about the effects on other conditions due to people discovering themselves while taking it.

Chances are most of UK doctors won't know much about it. Not until more research with positive outcomes is done. Only then it might be more routinely prescribed.

I think the best way to get it is to pay privately. No point waiting for the NHS to catch up with the research etc.