Can’t get out of this flare

[Olibop]

Hi all I just can’t get out of a flare I have had 2 Five day courses of steroids from my GP but each time I stop them it just gets worse again! Do the high does steroids usually take it away ? I have an app. Tomorrow with Rheumatology ! I am so frightened they will just think I am a baby but the pain is so bad ! Xx Thanks in advance xxx

[Krazykat26]

So sorry to hear that you're having such a tough time Olibop 💐

I have been having a real problem with flaring over the past year..I am diagnosed as having cutaneous lupus so I'm not with a rheumatologist but a dermatologist who prescribes steroids. Initially I was prescribed 20mgs for two weeks n then reduced by 5mgs every two weeks in order to stop them when I'd had them for two months..I seem to have problems when I reduce from 10-5mgs as my symptoms re-emerge..now I'm staying on 7.5mgs daily long term alongside ciclosporin which is an immune suppressant n things r improving.

Are u on any other meds such as hydroxychloroquine?

Your rheumy will definitely not think u are a baby..pain is pain!! Try to record any symptoms in a diary or notepad n take any pics of skin involvement to take to the appt..also I find it useful to make some notes on questions that I wanna ask. In a way it's a good thing that you're flaring because your rheumy will see first hand what a flare is for u.

Good luck with the appt..try not to worry about it because I have a feeling that u will get some better treatment from rheumy!!💐xx

[Olibop in reply to Krazykat26]

Thank you so much ! Yes I am on hydroxychloroquine 5 mg prednisone and lafluminide ! Xxx

[Krazykat26 in reply to Olibop]

Ok hydroxy usually takes a while before u start to notice a difference..typically a couple if months. As u probably know 5mgs of pred is a low dose so an increase might be in order..I'm no doctor but only speak from personal experience..beware side effects of pred..I get quite severe mood changes!! 😺😾😹😻🙀😽Xx

[Olibop in reply to Krazykat26]

I know I have been on hydroxy for many years and the others but just feels like they not working anymore! Thank you so much for the advice sometimes I just feel all alone xxx

[Krazykat26 in reply to Olibop]

I know it can be a very lonely place..in the wilderness with only your wolf for company is very distressing..BUT u are not alone.. you're here!! 🤗I have thought many times that the meds aren't working but I've tried reducing hydroxy n boy oh boy I noticed the difference..I'm on 400mgs(200mgs twice a day)

💐Xx

[Olibop in reply to Krazykat26]

Well about 18 months ago the hospital reduced my hydroxy and lafluminade and I seemed to go down hill a bit but was coping but this winter has been horrendous xxx Thanks again you are so kind 🤗

[Krazykat26 in reply to Olibop]

I went to dermy couple of weeks ago n I've made good progress on my current meds..I was terrified that he was going to mess them about coz I'm better than I have been for ages..he told me to stay on the same meds...oh what a wonderful day that was!!! I told everyone on here n we had a little cyber party!!

It might just be a simple increase in the meds that your on but there r other meds to try as well.

Do let us know how u get on...stay strong as u can n go into that appt with a positive attitude n hopefully u will have a little party of your own..even if it's on your own!!

In times of flares I have a mantra that I repeat over n over n it gets me through the pain..so sometimes I say it quietly n sometimes I really am very loud;

Every day in every way

I AM GETTING BETTER AND BETTER!!!

Other days I just bite on a bit of wood...😹that's not actually true xx

[miccika1 in reply to Olibop]

I reduced once hydroxy and got really bad. Never again! Hydroxy 400 it is for me. 200 doesn't work for me.

[Olibop]

Oh thank you very much Louise-a I hope he Can do something for me it’s driving me mad xxx

[overnighthearingloss]

Vitamin C and vitamin D may both be useful if you are not currently taking them.

[Flueby]

Just wanted to say hang in there it will eventually get better....I have just come out of a 3 month flare...I was scared i was stuck like it for ever and it was never going to go...but it has with time rest meds and looking after myself better. Keep persisting until u get what u need and keep in touch on here so u can be supported thru it. Take care xx

[SaneJane]

So sorry you're going through that. Try this. Take two days and eat nothing but dark green raw leafy vegetables (no dressing or salt or anything--just eat like chips), raw celery, raw cucumbers, raw carrots, baked or microwaved sweet potatoes (yam, the orange kind--red garnet variety type, nothing but fresh ginger and cinnamon on it (no butter or sugar of any kind), frozen berries or fresh (no sugar or even noncaloric sweeteners), raw cabbage, and water. Don't add anything like salt or sugar or any kind of fat or an egg or coffee or anything at all. Do this for two days. You'll be surprised at how full you can feel on all that if you eat enough of it. Don't substitute other items or add anything like tomatoes or dip. (Check with doc to see if it's safe for you to do this for few days. This is basically the second phase (baseline phase) of the Paddison Program, plus maybe the berries might be a later phase.

After two days, if it's helping, go five more days. It may seem impossible, but I did that with few diversions ever for about three months. Yes, I lost a dress size, but then I added basmati rice to stop the weight loss after about three months. Everything healed up and a lot of random symptoms went away.

If that doesn't help after two days, go with only celery and cucumbers plus water for two days, but only if you don't have diabetes or anything else that will require you to keep your blood sugar up. Most people can seriously reduce or eliminate pain on just cucumber and celery. You can't do that for long, but it shows you where your inflammation is coming from--the gut. It's like magic, but you can't eat that stuff and also have a piece of chicken and a glass of milk and expect it to work.

To be safe, ask your doctor if it the diet will harm you short term before you try it, not if they think it's the best nutrition longterm. A lot of doctors believe you have to have meat and milk and eggs to be healthy, but that's not consistent with science. You have to learn a lot about nutrition and take some supplements if you do this long term, but it's not meant to be forever.

You can also take VSL#3, a costly but very effective probiotic to start healing your gut so your immune system can start to heal. That's why you eat the raw veggies at first, plus sweet potatoes which can give you an amazing amount of energy, protein, and nutrition. Take it 4 capsules a day for three weeks and then 2 capsules a day for at least several months while being on the Paddison Program. I was eating probiotic foods before I got this kind of capsules and noticed a big improvement when I got the VSL#3. It's not cheap but it's well worth it.

Based on my experience and seeing a couple of dozen testimonials, you can get rid of a flare by doing the celery and cucumbers plus water for two solid days and then sticking to the baseline phase for a while with a greatly reduced set of symptoms as your gut continues to heal.

I had a hard time after about three months because I felt I had some nutritional issues, but adding a lot of basmati rice and a small amount of soaked then pressure cooked garbanzo beans helped a lot.

The other things I added but that caused me some problems with my joints while at the same time making me feel my nutrition was better was small amounts of olive oil, coldwater fish (wild-caught), avocado, and soaked almonds. However, if I eat those I pay a price. Red knuckles that are painful and my skin breaks out again. Anything with a lot of fat, even healthy fats. So, I feel as though it's good for my brain but maybe I'm just more easily satiated with it. I've done that, a little per day, for about a week and I'm about to go back off all high-fat items because my knuckles are red and my skin is breaking out. That means my inflammation is back up so I have to stop it.

I used to think the diet was easy because it's laid out for you, but I've never been good with hunger, so that's when I end up eating something that is only for the later phases of the diet or not on the diet at all but considered anti-inflammatory in the mainstream (cold water fish, olive oil, avocados, soaked almonds.) So, I'd say it's not as easy as all that because I started to feel after a few months as though physically I needed other nutrients and then I ended up getting flares from that but I'd still made a lot of progress in healing my gut. The main thing I find is that if I have something I'm not ready for I better measure it and keep it tidy and then stop and don't eat anything else off the diet that day. Tiny doesn't mean a small piece of fried chicken. I don't eat anything like that, ever. It means half a teaspoon of olive oil on a giant salad and that's it for fat for the day. That's hard for me. Or just having a few soaked almonds. That's hard too. You can have more, but then you'll have more of a flare.

The thing to remember is that you can control it with diet BUT you'll slow yourself down if you cheat or go to fast in adding foods back into your diet. I feel that I need to have a little bit more fat in my diet, and so I have to measure. Protein isn't a problem because veggies have a lot more protein than you'd think. If you're not thin but would like to be, this will do it for you, and if you do the work to keep stuffing raw veggies in your mouth and eating your sweet potatoes, you won't necessarily be hungry. You might be slightly hungry sometimes, but not very. It's just a lot of work but worth it.

I'd totally recommend trying two solid days without cheating of just cucumbers and celery and water and then add the other stuff in without the high-fat items or fish.

So, today I had multiple high-fat items. A handful of soaked almonds (soaking being important), some olive oil, and 1/4 of a small avocado. That is way too much and totally off the Paddison program except maybe in the very end stages when you're gut is totally healed and you can eat what you want but mostly stay on the diet because you want to stay healthy. So, I have to go back on the baseline phase with the sweet potatoes, greens, etc. and stay away from anything else except berries which don't cause me to flare and are very nutritious.

Tell us if you try it and follow it exactly. Results would be interesting.

[miccika1]

I usually get better w 20mg three days, 15 three days,10mg three days, 5mg three days. Maybe you need to be on the small dose constantly. When i was not able to be better i was on 20mg all the time and over two years Years managed to come down to 5mg each day. Which is considered a low dose and I don't have any side effects from it ..

[miccika1]

Also sometimes Tylenol helps.

[Olibop]

Thank you everyone for the help I have been the hospital today and the doc was very nice got to go for lots of tests ! Had a chest Ex-ray and she rang me up to say she is putting me on antibiotic xxxx she was so lovely I don’t know why I was so worried about going xxxx

[Krazykat26]

Yayyyy onwards n upwards!! Glad all went well xx

[Olibop in reply to Krazykat26]

Thank you so much KrazyKat26 xxx