Anyone with SLE taking collagen??

[Sara_A]

Hi, I've got sle, aps and inflammatory arthritis. I'm just getting over yet another infection this time a kidney infection with 3 day temps of 40.3 and nearly 2 weeks later from it starting I'm still feeling totally wiped out and just don't wanna get up and do anything.Anyway I've recently started taking different supplements zinc, magnesium and I also take turmeric with black pepper and ginger I think it is.

My question is tho does anyone have experience of taking collagen for fatigue in particular and general just not feeling so crap basically!! I have a friend with fibromyalgia who takes liquid collagen and she says that she has found it really good had had felt so much better with her fatigue.

Has anyone else got any experience I'm so desperate to feel better I'm on triple immunosuppressants and loads more meds too.

I'm just not living atm I can't commit to anything I want to do things but just have to let people down constantly as I've either got a high temp or I've got an upset stomach with my leflunomide! Which is another dilemma of mine, it's helping my joints etc but it's messed my stomach up and it's not settled I've been on it several months now 😥 and the wind of my goodness my kids even complain 😂 as it's pretty offensive 😱 so that's restrictive too!!

Thanks! 😊

[Pastel63]

Hello Sarah,I have the same problem. I use collagen but not really effects. I eat fruits, fish, kéfir, a lot of végétables. I think it's better but not suffisant against this terrible lupus. All the best Véronique

[IsleofWight1]

You’re having such a crap time but you finished your post with humour…brilliant!

I’ve tried collagen but it’s made no difference at all, in fact, coincidentally I think, my fatigue and tiredness have got worse, although I have got IDA now.

When first diagnosed with UCTD/lupus my consultant said there is no cure and no scientific evidence that alternative or herbal medicine works, although some people find something they swear by. Maybe it’s a case of getting recommendations or …(sorry, forgotten word…..what people think of it when they’ve tried it…) from others and hopefully finding one that works for you too.

I will say be careful of trying too many new things at once so you don’t get to know the effect on you of each individual one, you won’t knowknow what is doing what in the end. And as you’ve said, the side effects have to be taken into account too,

As for passing wind, it got so embarrassing, doing Pilates took a LOT of concentration and effort! I take peppermint oil capsules which have helped a lot.

I’m interested to hear the replies to this post and I hope you find something that works for you.

[Sara_A in reply to IsleofWight1]

Thank you for ur reply, uve got to still have a sense of humour or u would just give up I think 😅I'm starting to feel a bit more ok again today like my usual still shit lupus self like but ok! Not the horrendous unwell me at least

Yes I think u just have to try stuff if others recommend something that has worked for them it's worth a try I suppose 🤷

The turmeric has definitely helped my joints pain as I ran out for a couple of weeks and definitely felt a difference

Well I'd like to do pilates again but I absolutely daren't 😂😂😱 I've got an hrs massage booked this wk and I'm really worried, if it's a bad tummy day I've had it!!! Cos u can't blame someone else or just walk off 🤣🤣🤣 pmsl sorry!!

[SJR64]

Hi Sara, it's really hard to navigate how to get through all this I know and really feel for you! I have recently had the good fortune to be a study patient to a student nutritionist and that has done wonders re reducing my fatigue (and stomach related issues!) through dietary changes and also I gained a better understanding in only a few weeks/ couple of months. For example I now no longer crash every afternoon.

RE supplements, I personally always check with my rheumatologist first. You are on a lot of meds and triple immunosuppressants. As I have been intolerant to higher dosages of individual DMARDS (or just plain intolerant), I was put on triple for a very short while and got extremely unwell with this triple combination. Following the triple experience I spoke to my GP and am now waiting to be transferred to a specialist lupus centre - there are only about 10 in the UK and these are listed on the Lupus UK website.

All the best to you!

[IsleofWight1 in reply to SJR64]

Hi

Can you share more about your nutritional changes please?

Are you now on an anti inflammatory regime?

Thanks

[SJR64 in reply to IsleofWight1]

Hi, the nutritional changes are specific to the individual after huge amounts of consultation and filling out of questionnaires on health and symptoms, and doing food diaries and supplying lots of blood test results. You have to be specific about the target symptom which I selected as fatigue. It is also a 4 month process and I am in month 3 of it, and I have been asked to consult my GP regarding the possibility of further blood tests.

Things like high GABA foods and information provided around leaky gut so you might not be absorbing the nutrients or be able to convert them to energy are all new concepts to me and I am still in this process.

[IsleofWight1 in reply to SJR64]

I should have guessed. Nothing is straightforward any more!

Good luck , I hope it’s a successful outcome after all the effort you’re putting in to it.

[Sara_A in reply to SJR64]

Hi, it's really tricky with diet because I find it hard if I eat mega healthy like salad and veg all the time as I have IBS and then this issue with the leflunomide but then obviously eating unhealthy foods isn't good either 🤷I have taken a while to get the right DMARDS for me, sulfazalazine made me feel quite a lot better but I was sooo unwell with it horrendous fatigue like I couldn't walk 3 doors down my road! I was so poorly in that respect. Mycophenolate just stopped having any affect, azathioprine my liver didn't like so now I'm on mtx injection and leflunomide (with awful stomach side effects)

I think I will give the collagen a go 🤷 it's worth a try I suppose

[nottypical]

Hello Sarah

Why 3 immunosuppressants? - 3 times the potential side effects. Like IOW1 says changing too many things at once makes it pretty impossible to tell what did what. Some meds take a while to show an effect.

[Sara_A in reply to nottypical]

I'm on 3 because my disease isn't under control on 1 or 2 it's triple therapy. I only get side effects from the one I started most recently I haven't started everything at once 😊