How long does it take to get remission? - LUPUS UK

LUPUS UK

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How long does it take to get remission?

Cowsaresweet profile image
Cowsaresweet

I have recently been diagnosed with Lupus and now realise I have been having low level flares for 10 years. This time my flare was major especially my joints that were very swollen and painful. I deteriated over 3 weeks to the point I could barely walk and then got Steroids (15mg) which started 4 weeks ago. Last week I was also put on hydroxychloroquine.

I am getting much better but the joints are still swollen in the morning and painful overnight such that they wake me up. Next week I am supposed to be reducing the steroids.

So is this it? Will I have to put up with swollen joints every morning and pain? Is this my new normal?

Should I go back to the doctor if my joints are still swollen rather than go ahead and reduce the steroids as I have been advised?

Thanks for any thoughts you have

24 Replies

You've got a long way to go hun .the idea of the steroids is to keep the inflammation under control until the hydroxy kicks in .hydroxchloroquine takes at least 8 weeks to start to work 6 months for full effect and if that doesn't have the desired effect you may need another drug like mmf or methotrexate added into the mix.i hope you had your eyes tested before starting the hydroxchloroquine it's a must plus yearly. When I was diagnosed initial thoughts were 4 years to put me into remission I've been on hydroxchloroquine for 2 1/2 years and mmf for 18 months .its all going to depend on how you react to the meds....patience is a virtue with lupus .keep smiling xxx

Hi lovely hope your OK today? That's worrying about the eye test I've just started hydroxychloroquine and not had my eyes tested, I'm waiting for a referral but that could be months. Should I just get a normal eye test done? Xx

Hydroxchloroquine can cause retinal toxicity so eyes should be tested before you start and then every year .I've had mine done at the opticians as my local hospital didnt have the equipment until recently for the cambridge colour test.They are taking over my eye test next year.optitians eye test is adequate but they cant do the cambridge colour test so I'd ask rheumatology about that .also ask for an amsler chart.i keep mine on the fridge xx

I would think you should check in with your rheumatologist if your joints are visibly swollen. They may want to slow the reduction.

Just a thought. Better to be sure.

Let us know how it goes.

K

Hi Cowsaresweet , it took a good year for my lupus to get under control with all the different meds but it’s different for everyone - my finger joints are still swollen 5 years on - I have scar tissue all around my finger joints due to such a long time that they have been inflamed so I’m stuck with it now and they are very swollen - not saying that this will happen to you infact I’ve never knew that this could happen. Hope your pain and swelling gets under control soon xx

Everyone is different. Your doctor will give you different meds if the current o es arent working, and long term you will take as little meds as possible to co trol the symptoms. This baseline is different for different people. For example i ha e to take much more meds that you in order to keep things u der co trol and even then I have flares which require round of high doses steroids...some folks even go for infusions...very individual

I found a wonderful nutritionist by the name of Louise Blanchfield who has helped me reduce my inflammation to normal and has helped me rid me of my aches and pains. She has treated numerous people through transforming their diet (starting with going gluten dairy and sugar free). In four weeks I could feel the change. When I started I thought it was impossible, but I have eased into the diet with no issues at all and to see a positive change so soon has just charged me more to continue. I have since followed up with a doctor in the US who also reversed auto immune through diet and relaxation techniques (to release stress which triggers auto immune). I have read many many success stories in my last two months of research. I am convinced we need to spread the word of how drastically diet can reverse auto immune conditions. Links below for the two I have found most useful..

thefoodphysio.com/louise-bl...

Her ebook is available to download from her webpage or you can buy a hard copy also from her. I followed this up with a 90 minute consultation with her (online - she’s in Scotland)… and the consultation was eye opening and mind blowing all in one! Her husband had RA and could barely walk, and within 9 months his medication was stopped and he had completely reversed his RA and was leading an active life.

Another website :

blumcenterforhealth.com/

Her book is called “The Immune System Recovery Plan” by Susan Blum. Again a brilliant book.

After one month of STRICTLY following the diet, my doctor has reduced my medication and I hope to be medication free within a few months.

Hope this reaches as many people as possible and helps as many as possible!

MK83 profile image
MK83 in reply to RS0309

HI

Im trying to follow this aswell but u slip up bpw again. Im going gluten free diary free and sugar free. I have shakes made up of spinach kale and fruits and drink lits of water.

I follow medical medium but i know dr goodman usa based reversed her lupus with plant based.

Can i ask do you get chicken and fish ?

Im on a misson to feel my normal self so trying anything possible.

Thank you for sharing. Postive stuff like this is great amd thanks for the links to im going to use them to help with my journey.

We got this 💪

RS0309 profile image
RS0309 in reply to MK83

Great to hear you are trying this route also. You sound like you are doing a great job with it! I have heard many success stories based on this.

I do eat chicken and fish (fish like salmon, sardines and tuna are very good and highly anti inflammatory and should be taken three times a week but be weary of mercury levels in tuna as they work against you). But if you can leave chicken and go even more plant based then even better! I haven’t managed that yet though - I do love my protein :)

Turmeric, cinnamon, oregano and garlic also good to use regularly as they are anti inflammatory. And I was told to drink chicken bone broth soup (or use as a base for other soups so it goes in) three times a week so am doing that also. Also taking some supplements to boost my gut health, as well as eating cabbage regularly which has glutamine and is very good for improving gut health.

I liked Louise Blanchfield because her recipes and meal plans were a big help in showing me how to incorporate everything-

MK83 profile image
MK83 in reply to RS0309

Yeah ive heard bone broth is good.

I dont like tuna lol cant stand the smell but i eat salmon or cod mostly salmon l.

What suppliments do you use?

RS0309 profile image
RS0309 in reply to MK83

So far probiotics, calcium and magnesium, fish oil. But the nutritionist will adjust these as I progress. She gives supplements based upon symptoms and what’s needed more so it varies from person to person.

MK83 profile image
MK83 in reply to RS0309

Ahh brilliant im going to check them out.

Youve noticed a difference so far?

RS0309 profile image
RS0309 in reply to MK83

Definitely! Only been one month and my stool seems to reflect a slowly improving gut, my bloods show my inflammation has plummeted and my aches and pains are much better! So all good 😃

Louise was brilliant to initially start the diet, I am waiting to see how the appointment with Blum Centre of Health goes because they seem to have more wealth of experience. But Louise explained everything so simply and her recipes and meal plans really helped me stick to the diet because it gave me ideas of how to incorporate the required ingredients into my cooking properly

Hope all this helps!

MK83 profile image
MK83 in reply to RS0309

Ahh brilliant. Its nice when you see progress.

I will check it out. I uave off days where i dont eat fruit etc i need to be more stricter with it. My improvements are slow.

I will get on this properly.

RS0309 profile image
RS0309 in reply to MK83

Yeah you do need to be disciplined. Planning ahead is the key - you will always slip if you don’t know what the next meal or snack is going to be. Some things you can slip on now and then but some you can’t - especially for the first few weeks. Gluten is something you have to avoid 100%. Even a small bit will knock you back a lot. Dairy potentially could also. Having less fruits one day isn’t necessarily a huge issue, having one meal with vegetable oil in two weeks again not a biggie, but dairy and gluten are big no nos.

MK83 profile image
MK83 in reply to RS0309

Okay so i best go shopping for gluten free stuff then i hardly have much dairy anyway if i do its alpro based.

Okay i need to be strict now.

Thank you so much

RS0309 profile image
RS0309 in reply to MK83

Please do go to a nutritionist for help… one of the ones I recommended. That guidance and support really helps. Hope it’s affordable for you. Louise takes £99 for two months support, and initial consultation plus follow up. She’s a good place to start anyone off I reckon.

MK83 profile image
MK83 in reply to RS0309

Yeah im happy to pay that price so will defo check it out.

I defo do need guidence with it all. But least ive started off early.

RS0309 profile image
RS0309 in reply to MK83

The earlier the better! Best of luck… hope it all works out for you!

MK83 profile image
MK83 in reply to RS0309

Thank you....hope it works out for you to. 💪

Sorry I should have mentioned, I have been diagnosed with Lupus, possibly RA and secondary Sjogrens

It was at least 6 months before I found the hydroxychloroquine really kicked in, but within 12 months I felt much more like myself. I’ve not needed any steroids for 3 years now.

I still get the odd minor flare, and my joints DO still hurt, especially in the morning, but I feel much better in myself and my energy levels have vastly improved.

I have had SLE for nearly 30 years now and never ever been in remission, sorry for this sort of news x

Hi I've been on both prednisone and hydroxychloroquine for many years. It does take a few weeks before you feel the real benefits from taking hydroxychloroquine so hang on in there it's worth it. I still have flares occasionally as we all do but generally my joints are good. Hope you feel better soon xx

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