SIJ’S going off!

Always something new and exciting… Woke up this morning and my SIJ’s were flaring bad. I am not due for a ablation until November, just had it in May.
Could be my Bertolotti syndrome is acting up, it is a real mess down there.
Only have one Norco left, it is like only one bullet left in the six shooter… Of course Tramadol doesn’t do much for real pain, my Pain Doctor asked me how much it helps, I said 30%, but it mostly works as a anti-anxiety medication… Back feels okay as long as I am flat on my back, I cannot bend forward at all. Hopefully it will be better tomorrow, or I will have to make a emergancy appointment with him.
Have not really got any tremendous reversal from my latest Biologic Cosentyx, though my muscles are mostly relaxed. I think a lot of the SIJ pain is PsA related, but my Rheumy is not convinced. Something caused the inflammation and enthesitis. I feel like a juggling act sometimes, never a dull moment.

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Yes, a juggling act is a good way of putting it! I’m sorry to hear Costenyx is not (yet?) doing the job, it sounds like something needs to change.

The Stelara is great on my joints so far, though I just did the calculations and realised the loading dose for crohns is 4 x the dose they use for PsA!!! Now I just have to respond in the gut or they’ll take the Stelara away and the PsA will likely return as well… sigh.

Oh and my weird face rash/hives are back. Today they are focused on my nose, I was joking with my daughter I look like Rudolph :joy::joy:

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If you haven’t responded to the loading doses of Cosentyx, they say it’s then more likely you’ll respond around the 4 month mark. This biologic unlike most of the others has an initial 4 month/16 weeks review period unlike the more normal 3 month/12 weeks review period. So I would guess it’s a matter of just plugging on.

I can’t remember if you’re now taking the 300mg dose given your prescription nightmare. I really hope you are.

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Only have approval for 150mg right now.
Actually just got the prescription sorted today, so they will ship next week.
I am willing to stick it out and wait for it to kick in, I am not going anywhere…
Stelera did nothing for me, that was about 5 years ago.
My pain doctor won’t be able to see me until next Thursday for my ruptured disc, I don’t think it is the SIJ’s because it mainly hurts when I straighten up or bend at the waist. I asked about getting the ruptured disc imaged again, it has been almost 5 years, feels like it has gotten worse.

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Have you ever tried SIJ injections.
They helped me immensely.

Am on 150 dose cosentyx, once a month, hope you will benefit from it, maybe together w something else. I have been given an appointment in september at the hospital, am slightly uneasy as budget cuts to the national health service may easily result in medicines not being given anymore, or replaced with biosimilars. On principle am not against biosimilars, only I find that am going on okay because also take mxt, and even so my knee baker cyst has bulged again, my wrist on my right hand makes holding things an illusion more than a reality, and I tend to think pain and inflammation are being contained more by dietary restrictions. Will start a long fast for the pain, 5 days would do wonders.

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What are sijs?

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Sacro iliac joints.

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I also take MTX, I inject could not handle the nasty tasting pills, all I could taste was a metallic flavor. My Rheumy said this helps prevent the body from making antibodies to fight the biologic. MTX has never felt like it helped me any, but it is well tolerated.
That would be awful if They changed your medications just for financial reasons, the biologics are tricky enough, who’s to say the cheap copy will work as good, or the body might reject it? Lets hope they keep well enough alone, “if it ain’t broke, don’t fix it!”

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These have to be one of the most painful joints, as they carry the weight of the body, they are effected both standing and sitting. That whole mess I have with the extra vertebrae, is a real pain! The pain tends to radiate out to the outside of the iliac bones.
I do have one of those SIJ belts, that seem to help some, kind of holds everything in place, not very comfortable when sitting down but works well for standing. It had a cushion that puts pressure on the sacrum.
I have been taking muscle relaxers, that seems to help some, I just can’t do anything while taking them, as it gives me “mush brain”…
Hope everyone has a nice weekend!

Oh BTW I was woken by a big crash this morning around
5 am When I looked outside with my flashlight (torch) there was a huge mountain lion about 15’ away from me, we just looked at each other, so I made loud cat noises to scare him away, instead I saw Buster run outside to attack the lion! When he gauged the size discrepancy, he ran under the house to safety… I went and got my iPad to see about getting a photo, went to a end window, I could here the beast breathing outside, kind like the way a horse breaths, pushing out his breath every couple seconds… He/she was probably about a meter tall, could not see how long, but the damage the lion did to the structure in the garden with one swipe of his massive paw was impressive! Never a dull moment out here in the wilds with my trusty cat Buster!

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I wish you could have caught a picture of the lion! It sounds wonderful to be in nature, must move out of town to enjoy nature more some day. Only Rome is so spectacular with its architectural art that I suppose it compensates somewhat

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I hear they have nice vacation spots in the country, locals are starting to enjoy in Italy. One of the best parts of living in the country is how quiet it is!

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Results are advertised as good overall for biosimilars, am trying in any case to compensate as much as poss with fasting and dietary restrictions. Have been reading up on something called mast cell activation syndrome, which would explain my fainting upon smelling some perfumes or smoke, reacting with violent breathing difficulties too, which makes me carry ventilators . Anyone w some of these symptoms?

Never heard of that, but what I just read it would seem that if you could do a cleansing fast of the foods that are activating the mast cells, it might be able to reset the system, like unplugging the computer and plugging it back in…

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There is no biosimilar to Cosentyx yet, thankfully. And remember you always have the option to increase your Cosentyx to 300mgs too. Here in the UK that’s the prescribed dose if you’ve previously had another biologic or several fail for you. So that’s what I was started on.

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Wow - what an encounter! Glad Buster hid under the house too.

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Thanks for input, have started a general reset fast, it really worked wonders in the past, certainly will do no harm, even for a long period…after all Coco Chanel said one is never too rich or too thin…

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I’ve been too thin. It ain’t good. Still waiting for the first bit.

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Buster would have got on well with Milly, now deceased. Neighbours spotted her attacking a fox one night - chased it, leapt on its back - they said it was like a lion attacking a wildebeest. All the more impressive as she was quite small and about 22 years old at the time!

I’d give my eye-teeth to see a mountain lion. Not common in Kent, UK. Where you live sounds fab Jon.

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The first bit , alas… As for second part, hoping to get tolerable weight on my bones , am on second day of my fast and it’s making me feel good as far as energy and brain fog is concerned , so will continue for about a week and then go on with a series back to back fast weekdays refeed weekend. Am afraid before I get to be too thin I would have to fast for several months…It’s just that cannot resist saying that, it makes me feel so French and debonair… xxx

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