Supplements and sulking...

[Allydee]

Hi everyone... well 9 weeks into taking hydroxychoroquine I’m still having massive problems with my knees, so now on yet another course of steroids. I gave up drinking alcohol a week ago, I’ve just started swimming and trying to look after myself better - thought it would help but my knees are so sore again today despite everything. Just when i hope I’ve done all i can, it knocks me back and I’m really trying not to let it!!! Consultant said I need to give it 10 weeks before looking at other meds I’ve been taking omega 3 supplements but just about to run out... is it worth buying more, or are there other supplements that are worth trying please?

[Naladog]

Hi Alluded,

I recommend you D3+K2 supplements and vitamin B and a balanced diet (many vegetables, legumes and fruits). I feel much better since I am taking them. Due to the autoimmune disease and Covid19 a rheumatologist told me that vitamin D is very helpful.

[Poppypig]

Hydroxychloroquine takes ages (months) to kick in but when it does its magical. Here's hoping it works for you soon

[Allydee in reply to Poppypig]

thank you - I hope so

[TillyO]

I’m back on hydroxy after trying without any meds but anti bodies are still the same so I continue to take various vitamins including Iron which I know has helped anemia also I take D, A, Omega 3 , magnesium, B5, B6, zinc

I also have a lot of gastric issues including Haitial hernia and folds in esophagus and have to take nexium 40mg x 3 a day and cidine 1mg which I know can stop some vitamin absorption.

Can’t be sure all these vitamins help but I have a lot of wrist pain and it is bearable most days unless I do too much so I continue to take everything.

Hope you get your knees under control soon.

If anyone else knows much about the above supplements I’d like to know how they are getting on as I hate taking so many as I feel they get stuck in esophagus after taking them

[Allydee in reply to TillyO]

thank you - think I'll go along to Holland and Barratt and see if I can get 3 for 2!

[Hamptons]

Did take about 3 months to get going but then it was like a miracle drug. Gave me back my life. Take many supplements, they help something,even if it’s just keeping Holland & Barrett going in difficult times.

I use Vit D lots of vit E, vit C magnesium, potassium, omega 3 And collagen. Hardly at ballerina status and knees can still grumble on a damp day but it all helps.

Stick with it, the magical morning will come.

[Allydee in reply to Hamptons]

thank you - it's messages like those that really give me hope!

[Chanpreet_Walia LUPUS UK]

Hi Allydee,

I'm sorry to hear about the pain you are currently experiencing. It is important to bear in mind that hydroxychloroquine can take 3-6 months to exert its full effects. I do hope the steroids will help.

Giving up alcohol especially at this time is a good decision as alcohol can affect certain medications you take. Learn more about lupus and medication at lupusuk.org.uk/wp-content/u....

Swimming is a great low-impact and lupus-friendly exercise. We published a blog article on lupus and pain management which I hope you will find useful - lupusuk.org.uk/pain-managem....

Would you like someone to speak to? We can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can request details of your local Contact at lupusuk.org.uk/contacts/

Best wishes,

Chanpreet

[Allydee in reply to Chanpreet_Walia]

thank you so much for your reply - I'm going to sign up to LUPUS uk right now as it looks like there is a lot of support and good advice which is needed right now

[Piscesdreamer]

It took 9 months for me to feel all the benefits of hydroxychloroquine. It has alleviated my joint pain and most of my fatigue.

[WinterSwimmer]

If you are swimming breaststroke that could be making your knees worse. Maybe build up your distance slowly? I am a lifelong swimmer and have found that I need to alternate between breaststroke and front crawl to keep the knee pain down. Don't give up swimming though - it's very good for you. If the pain bothers you at night I recommend a balm with 5% pure CBD oil which works brilliantly for me, even it it does make you smell like an old doper.

[Allydee in reply to WinterSwimmer]

thank you for your reply - I feel so daft as I automatically went to breaststroke yesterday which my knees did not like!!! I did 8 of the slowest laps I've every done and when I go back tomorrow I'll try front crawl until the muscles can support anything else.

[Allydee]

Thanks for replying - I thought it was 'safe' as alcohol shouldn't affect the drugs I'm taking, but I knew I was drinking too many units per week. In a bid to see if alcohol was having any affect I just gave up completely. Problem is I'm now 'tired but wired' from prednisolone and have no idea yet if giving up has helped. I'm guessing it will even if it's only dropping calories and learning not to use alcohol and food as emotional props when the going gets tough ...