questions questions...

[NettleTea]

I have questions.
I currently have a BMI of about 35 and have been gaining weight since I was pregnant with my first child at age 35 and developed primary lymphodema. I was previously always a size 8-10. Initially only 1 leg swelled, and then went down, but when my daughter was 2 I put on 2 stone in 3 months and thats when we discovered the lymphodema. It progressed when I had my second child at age 40 and then one leg stayed fully swollen and the second started too, and the weight did a thing of jumping (often when something stressful happened) and then plateaued, often for a year or more.
I dont drink or smoke, I only have sugar in coffee I make myself, not anything else, I dont eat junk food or drink carbonated drinks, I have a fairly outdoor life - running a glampingsite and a forest school in school holidays. I cook most of my food from scratch. I went to weighwatchers for over a year weighing and tracking my food and I lost 1/2 lb.

I have alot of inflammatory things going on. I also had 3 injuries in the worst affected lymphodema leg - ongoing plantar fascilitis (12 years) I broke my leg just above the ankle and kept walking on it for a month, and more recently a meniscus tear in October and another a couple of months back, which made the lymphodema much worse again and my weight jumped 4kg in 1 week.

They are doing last stage clinical trials for GLP-1 for lymphodema patients and it seems to be looking good - not necessarily for the weight loss, but thats obviously a bonus and definately helps reduce the load on the lymphatic system, but mainly for the anti inflammatory effects that seem to have a really big positive influence. Some people in the US seem to be using it to slowly lopse weight - especially Monjaro and Zepbound, and also microdosing them as the anti inflammatory effect seems to be OK even with that. But the inflammation comes back as soon as its stopped, and associated pain.

I have high blood pressure, sleep apnoea, overweight but no diabetes.

Im also a carer so on a very low income. How are people doing this - can you cycle through the special offers? Do you have to go up or can you just stay low and cheaper but lose weight more slowly but at least deal with the anti inflammatory bit. Primary lymphodema has been recognised as an inflammatory disease now.

Yes you cycle through special offers.

And yes, most people staying the lower doses for longer. Its rare that you find new starters going up a dose a month.

You can also "click count" to make it cost effective. For example, use 2.5mg Mounjaro pen for a month. Then stay in 2.5mg but buy a 5mg pen - you then get 8 2.5mg doses from it. You can carry on like that up the doses, as long as you maintain good hygiene.

It sounds like you could really benefit from Mounjaro. Hopefully the NHS will prescribe it for lymphodema eventually. In the meantime:

Yes, you can cycle through the special offers.

No, you don’t necessarily have to go up through the doses. Plenty of people experience ani-inflammatory benefits on low doses. You can only try.

Going through the doses isn’t a simple stay on it and it works op. But obvs due to cost many people try to do that op. However 5mg is the first therapeutic dose, and it sounds like you need a therapeutic dose. Yes you can cycle through offers, but your body may react well on a low dose, and you may need a high dose, no one can predict this.

i also had high blood pressure and sleep apnea so I’d urge getting the weight off to resolve those issues if possible.

@NettleTea , so sorry to read your story. I really hope they start prescribing it for inflammatory conditions soon on the NHS. It will benefit A LOT of people.

Here is my little contribution:-

Yes, lots of people microdose for inflammatory reasons. 1.25mg, 2mg, 2.5mg, 3mg, 3.25mg, 3.5mg etc etc. It depends on which dose works for you. A friend is doing 1mg every 5 days. Obviously, because of costs people try to stay on the lowest effective dose for their symptoms.
From your post, sounds like you have good going Lymphoedema so may take weeks to see any effect. So maybe do not be in a hurry to rush up the dose. I think improvement in your plantar fascitis would be the earliest indicator.

As you would be privately funding in the meantime and you primaeily want to take Mj for inflammatory reasons, bear in mind that you would have to order a new pen every 4 - 5.5 weeks, as it is currently mainly dispensed for weightloss (non- NHS prescriptions). Most pharmacies allow every 6 weeks, so do not wait till it's 6 weks exactly.

Users of Mounjaro are the most experienced with Mj, GPs and Pharmacists here are gradually catching up but medication in the UK is heavily regulated (a good thing). So even if they know the benefits or have great knowledge they cannot go off script.
So seek out Mounjaro forums on various websites (across UK & other countries), reseacrch papers etc and arm yourself with knowledge on what others are experiencing/doing and use it to help yourself.

All the best.

I've found mj brilliant for inflammation related to my knee which was quite bad after I fell down the stairs a few years ago. I take it to lose weight so that was a bonus.
I'd give it a go in your case but you do need to understand that the inflammation will likely come back if you stop taking it. So you need to plan on being on it in the long term if it works.
Doses, I'd see how it goes. I was on 5mg before the inflammation effects kicked in but everyone reacts differently.

thank you. Its helpful to hear perspectives. My GP has referred me to the weightloss in the hope they may access wegovy, which some with lymphodema do use. I will see what they say, although Im not sure they will take my GPs word that Ive been trying to lose weight for years. And in the meantime I will look into whether MJ is going to be possible. The GP hopes they will ease up on the restrictions

an update. Ive started. took my first dose today. it was scary and Im still a bit shaky.

I saw my lymphodema specialist on Monday and talked to him about it. He said that he was sad that he wasnt able to prescribe but hoped that this might change in the future if the trials go well.

he said that at the recent national conference that he went to it was just about all people were talking about, but reminded me LOW DOSE for the inflammation. I do need that weight off though. We will see how it goes! But Ive made the leap and hopefully this is the start of a new phase

Congratulations OP. I hope you’re as successful as many of us on WLI have been in losing the weight and resolving the lymphoedema.

Are you taking Mounjaro or Wegovy? You might find it helpful to join a new starters thread to help support you during your journey?

monjaro. I signed to the April 26 starters, but then saw there was a May 26 so joined that one too!

where do you get spare needles from if you do this, just for future reference

ukmedi.co.uk/products/1ml-reduced-dead-space-syringes-reduced-dead-space-lw1-ukmedi-co-uk

https://ukmedi.co.uk/products/32g-pink-6mm-meso-relle-mesotherapy-needle-meso-relle-am326-ukmedi-co-uk

Spare needles and syringes.
These needles attach to syringes not to pens.

https://ukmedi.co.uk/products/32g-4mm-bd-micro-fine-ultra-pen-needles-penta-point-bd-320497-ukmedi-co-uk

These are spare pen needles

Thank you. do people remove the excess left at the end of the 4 weeks and thats why they are using the single use syringes, or drawing directly from the pen to measure dosages? from what I read on the info, the current dose I will take is 0.6ml which delivers the 2.5mg dose in it.

But if I was using the 5mg pen (for example) to get 2.5mg doses then you either click 1/2 the number between the 2 dosing points (so if it were 12 clicks to get to '1' you would do 6 clicks) and then you would get 0.3ml dose delivered with half of the amount of drug in it (so 2.5mg) or you would draw off 0.3ml with a syringe?

Counting clicks sounds less likely to cause contamination issues.

anyway, thats in the future. so not to worry about yet.

Ive downloaded the Nutracheck and am horrified by how much my white coffee with sugar is. even cutting 2 sugars to 1 will help! or stick to the tea.

Yes, the needle and syringe is used to extract the extra left after the 4th dose. Some people are still able to get the pen to click into a full dose after the 4th dose - it involves giving the knob a hard twist so it overcomes the mechanism that stops it from clicking.

Extracting 0.6mls is the full dose of whatever strength that pen is.

Yes, extracting 0.3mls from a 2.5mg pen is 1.25mg,
0.3mls from a 5mg pen is 2.5 mg and so on.

I will attach some click charts which may be helpful for you incase you need it at some point. All give the same answer at the end... one is a chart, the other is a calculator. You can use the one you prefer.

https://monj.co.uk/monj-mounjaro-click-chart/

https://www.vrgrowth.co.uk/mounjaro-clicks

this is great, thank you

Just done my second weigh in. I have lost 4.1 kg from the start so far (although 1.5 was in the 2 weeks running up to getting the jab)

second week much lower (0.6kg) but still moving downwards

I have ordered my syringes and needles and a couple of nice stainless steel holders which were reduced which I can put my jewellery making tools into!