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#517801 11/11/17 01:19 PM
Joined: Mar 2016
Posts: 37
drone3 Offline OP
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Posts: 37
Heya All,

I was kicking the soccer ball around with my boy in the back yard. Two days later I'm suffering from a really bad flare in both SIJ, hip, spine, neck, sternum. I have been on the NSD since Jan. which has been amazing but now I'm feeling pretty helpless.

I'm really not sure how to stop the flare, I just keep taking paracetamol and endone. I can't take NSAIDs due to GIT bleeding. It's been 4 days now I'm on the verge of just popping a Celebrex. What are my options?

Also, is this typical to flare from such minimal physical exercise ? The only other time I flared like this was when i played some light Bball in the park. I just can't comprehend how such little physical exertion causes such fiery pain?

Any help would be so appreciated

thanks -d


1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA)
Taking - Humira, MTX, Triphala, ReMag, Transdermal Magnesium, Lactoferrin, Peppermint oil.
Diet - No Sugar/Dairy/Starch/Alcohol
Joined: Sep 2015
Posts: 305
Likes: 2
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: Sep 2015
Posts: 305
Likes: 2
Hello Drone:

Starting nine months ago my immune system changed and from then on anything I strain stays in a permanent state of burning,soreness, and tightness. I tried a fast and it didn't help.

Perhaps you can try fasting a few days along with just water and borage seed oil. Pehaps other suppliments and even the apples.

Have you consulted with the John's important resources for ideas?

I guess you can't ice your whole body but have you tried alternating ice and heat? Perhaps a sauna and... ???

Of course streching/yoga might help. Just be careful with the back.

I hope that helps


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
F
Frederick
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Frederick
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Originally Posted By drone3


I'm really not sure how to stop the flare I just keep taking paracetamol and endone. I can't take NSAIDs due to GIT bleeding. It's been 4 days now I'm on the verge of just popping a Celebrex. What are my options?

Also, is this typical to flare from such minimal physical exercise ?



The only way I have found to stop a flare is the right combination of rest and exercise with an increase or change in medication. It may be possible to avoid your stomach problems with a stomach protecting drug and then you could go on to NSAIDs.

You will have to find the right combination of exercises and rest yourself. As for a stomach protecting drug I and others are on lansoprazole. Omeprazole, Esomeprazole, are other such drugs. Check them out on the net and ask your doc. about such things.

Joined: Mar 2016
Posts: 37
drone3 Offline OP
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Posts: 37
Thanks for the advice guys, really appreciated.

So the flare stopped yesterday, i think it lasted 6 days. Unfortunately my left knee has been effected somehow from the flare and is now the size of a watermelon. I haven't had any arthritic knee pain before and this seems to be something else like Bursitis or perhaps Gout. There is a lot of pressure on the knee and above it with the bursa full of fluid. I can't bend my knee properly and I'm using crutches to get around the house. Booked in to see the rheumatologist tomorrow.

Has anyone suffered from bursitis straight after a flare up?

thanks everyone,
trying to stay positive.

-d


1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA)
Taking - Humira, MTX, Triphala, ReMag, Transdermal Magnesium, Lactoferrin, Peppermint oil.
Diet - No Sugar/Dairy/Starch/Alcohol
Joined: Mar 2016
Posts: 37
drone3 Offline OP
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Joined: Mar 2016
Posts: 37
Just an update, I had the fluid drained out of my knee and the Dr gave me a steroid injection. Each day my knee became better and better until i no longer needed crutches. After two days of no crutches the swelling, fluid build up and pain started to return. I'm currently icing it but i have no idea how to get out of this cycle? can anyone guide me?


1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA)
Taking - Humira, MTX, Triphala, ReMag, Transdermal Magnesium, Lactoferrin, Peppermint oil.
Diet - No Sugar/Dairy/Starch/Alcohol
Joined: Nov 2017
Posts: 1
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hi Drone,

sorry you're in such pain! I've had sports-related flares several times. You can try and take some good quality CBD (cannbidiol) oil, under the tongue. This, in combination with Ibuprofen, has helped me a lot. What has also helped is Sam-E, it just helps with the pain. Good luck,
Hilja

Joined: Sep 2001
Posts: 8,397
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Lon Offline
Very_Addicted_to_AS_Kickin
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Joined: Sep 2001
Posts: 8,397
Drone- we sympathize with you.
All I can do is push slowly until I feel the first pain and then BACK OFF.
This is an every day throughout our life puzzle. But for sure keep moving!
Lon

Joined: Mar 2016
Posts: 37
drone3 Offline OP
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Joined: Mar 2016
Posts: 37
Ok, another update...

I had the fluid drained out of the knee again and another steroid injection.
The rheumy wants me to start methotrexate, but she said it wont help my spine...She wants me to switch from infliximab to humira and combine it with methotrexate, as humira will cover the spine and MTX will cover periphery joints and allow the humira to last longer. I'm on Infliximab through my Gastro. Dr and i really dont think he will switch as it is helped keep me out of hospital for intestinal blockages.

The rheumy really wants me to start MTX but did mention Sulfasalazine. I just want to be completely honest that I'm petrified of all these drugs and their potential side effects. I'm 36, how long can i even expect to be on MTX without it damaging my liver?

I do feel like i need something in addition to my NSD diet and Infliximab but I really fear MTX.

am i over-reacting , what do you guys think?


1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA)
Taking - Humira, MTX, Triphala, ReMag, Transdermal Magnesium, Lactoferrin, Peppermint oil.
Diet - No Sugar/Dairy/Starch/Alcohol
Joined: Apr 2002
Posts: 12,465
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mig Offline
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Posts: 12,465
Hi Drone3,

My understanding is that there is very little 'good' evidence to support the idea that MTX is helpful for treating AS, although it is helpful in treating RA. Sulfasalazine I believe is less problematic in terms of side effects compared to MTX (providing you are not allergic to sulpha). I was on it for 15+ yrs with no problems. I'm no longer on it since Remicade has worked so well on its own. SSZ, I believe, is also used for the treatment of Crohn's so perhaps ask your Gastro doc's opinion about possibly adding SSZ while staying on Remicade. If Remicade is working for your intestinal tract but not helping enough with AS, then trying Humira might not be a bad idea. Before deciding, I'd want to ask how long a trial would be sufficient to know, and if it doesn't improve things, will your Rheumy switch you back to Remicade?

Anyway, it sounds like you have options to explore... ultimately, it's your choice to make taking into account the guidance from both of your specialists. It is certainly trickier when they offer differing opinions. You are always free to change your mind.

Wishing you the best!


mig

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