connective tissues & lupus flare

[Geeforce99]

Hi everyone, hope everyone is coping the heat is not good here in UK, I have recently and still am having issues with my left eye which is dry and painful, eye clinic ruled out GCA advised could be linked to post covid (many people in waiting area had Covid a week or two ago and have never had eye issues before) causing fatigue, flare up of lupus and CTD, dryness is sjogrens . Now whole body feels like it did when I had swine flu years back feels like need to lay on floor with foot and knee swollen up struggle just to get in shower it’s crazy and need to wear shoes in bed due to toes cramp otherwise. I have been give course of steroids,. I have worked about three days this month as went back after Covid one day then was off due to flare and fatigue then tried again two days now off again bit concerned they might give me the boot 🥾 hard not to stress.

Can I ask, what other supplements are others taking and has any one ever tried pycnogenol pine bark extract to help with inflammation? Seems lots of good reports on net. I am taking Vitamin d due to not going out in sun due to sensitivity and omega three.

Would be good to hear what else can work or ease symptoms thank you for reading this post …🙂 take care all the best

[EG74]

Hi Geeforce99. Sorry about your eye, I have also dry eyes now, seems the heat affects more the eyes. Some people in the forum advised me to get Hyco san extra drops and I did and relieved so well the dry eyes. I’m using 3 or 4 times per day. I may need to get more as the bottle is expensive and doesn’t seem it will get me to the end of the month. Regarding vitamins, I take vit D, B, omega 3, magnesium, iron and optibac for women. Also kefir. Magnesium I get vegan ones and I take 2 pills in the morning and two at night and helps me sleeping well. I was also taking before HCQ , CBD and CBN oil but I stopped it for a while at least until my review.

[Geeforce99 in reply to EG74]

Hi EG74 thank for you reply sorry to hear you have same issues with your eyes, grateful for info on the drops, normal drops not much use waiting on letter from rheumatologist with plan and recommendations. What type of magnesium do you get there are different types and they might help with cramps in legs and feet thank you, 😃

[EG74 in reply to Geeforce99]

I order together health magnesium from mineral salts. Sometimes ijust Take two capsules at nights and forget to take in te morning. I don’t have leg cramps since I take them

[Blessyou]

Hi , my Lupus Dr has told me to take vitamin E . Hope this helps you. I have got the same eye problem . I found that Optrex helps with dry eyes. You spray it onto closed eyes it’s amazing . Sending you a hug x

[Geeforce99 in reply to Blessyou]

Hi Blessyou thank you for your reply I was using that spray and it worked well👍🏻 I had this flare up and no longer helped after hour or so my eyes 👀 got worse again now using standard drops from chemist need to deep using it every three hours crazy advised to try gel might last longer, once it arrives. Take care 😄

[bathouse]

Hello Sorry to hear about your painful eye, its not pleasant.

I started getting eye symptoms around 4 of years ago, before covid, i had dry eyes, had puntal plug put in one eye, he couldnt get the left one in that day. I went on a FAB trial, where you finger prick 4 times a day and puta drop of my blood into my eyes, blood is the closest thing to tears. Gave me immense relief. My left eye always felt like there was something in it/irritated by something, it could also ache and be tender if putting eye shadow on.

Fast forward to last year, I had stopped the finger prick blood due to Covid (not wanting to put my fingers near my eyes however clean they were) and used over the counter drops. My eyes got worse. Went back to Moorfields and the dryness has got worse, there are abrasions now. Had to start antibiotic eye drops, steroid eye drops and now on Ikervis (immunosuppressant eye drops) every night. Consultant managed to get left puntal plug in.

I have had some relief, most days better but recently I feel I have flared with joint/muscle pain and morning stiffness and puffy hands, my left eye has been a little achy.

All these issues really are a challenge!

[Geeforce99 in reply to bathouse]

Hi bathouse thank you for your reply, sorry to hear what you have been going through, glad to hear you have had some treatment which helped and hope better days will come soon, it is a battle with these conditions, the heat is making everything much worse here, take care 😃

[Sara_A]

Hi, what is your diet like? I hate it when people go on about diet blah blah.... cos it's the last thing you want to talk about or change when u feel so rough and tired etc.I only ask you as I have recently changed to a Mediterranean style diet/healthy eating diet and I only eat fresh foods non processed foods, no sugar etc. Since doing this I have noticed a significant change in my joint pain and swelling. And if I have eaten anything other than this for a day or so I really notice it I can tell you. My hands feels sore, my usual painful joints feel flared and painful.

So I honestly can say that I have felt a significant benefit from basically cutting out all the rubbish from my diet and eating green foods and fish, chicken, seeds, nuts etc

It's not as bad as it sounds either 😂

[Geeforce99 in reply to Sara_A]

Hello Sara_A thank you for your reply, since may 2022 after seeing private rheumatologist as could not wait a year to see NHS one I have been eating much better whole foods only no processed food, med diet and no added sugar, no gluten, eating fish and chicken nuts and only cooking with olive oil, filling half plate with fruit and veg, eating oats in the hope of help with energy to help with fatigue. Glad to hear helped for you did me too until I got Covid then since then all down hill just have to hope course of steroids do the job 🤞😃

[Sara_A in reply to Geeforce99]

Oh I see, covid has a lot to answer for!!! Yes 🤞 it all calms down and gets back to normal for you. Its hard but once you get into the habit of eating that way and feel benefits from it u feel much better I felt better overall x

[Winter_night]

Hi Geeforce. I have severe dry eye and was using Hylo Forte up until I saw an ophthalmologist and he recommended Thealoz Duo which I think are slightly more effective, so far anyway. He advised me to use 6 times a day and then a carbomer gel at night. Hope you start to feel more comfortable soon - it’s not a nice feeling!

[Geeforce99 in reply to Winter_night]

Hi Winter_night thank you for you reply, good to hear what other folks are using, I was advised to use carbomer during the day and that seems to work I use it up to five times during day, I use Xailin night gel and it really works its a very thick gel but helped, nice to be able to open eyes in morning and with out them stinging, usually it’s hard to open eyes like something was wrong but it was just due to how dry they were and gunk around them. I am starting to see improvement already thank you, take care 😃

[Winter_night]

Hi Geeforce, do you find Xailin good? I’m not sure the carbomer is strong enough to last through the night… I tend to need to pop more in about 4am when I wake running my eyes 😵‍💫 I might switch to Xailin at night and see if that’s better!

[Geeforce99 in reply to Winter_night]

Hi Winter_night yes it does last until I get up. takes time to get used to putting it in I usually apply it to lower eyelid then blink allot and it takes does make vision blurred for while once applied 5 mins or so, hope works for you all the best. 😃

[Winter_night in reply to Geeforce99]

Thank you! I’m already looking for it online 😁

[Geeforce99 in reply to Winter_night]

Hi Winter_night I got mine on Amazon for good price pack of two under seven pounds 👍🏻

[Winter_night]

That’s handy to know! Thank you!