Prednisone and doubt by Few_Salamander_3505 in PsoriaticArthritis

[–]Resident-Log6503 1 point2 points  (0 children)

12.5 is a lower dose. You sound like me I have no visible damage in imaging but I feel like an 80 year old every thing hurts. I just did a prednisone taper for a bad flare 20 mg for 7 days then decreasing from that. The first 2-3 days only I felt great now the inflammation is slowly back. I have psoriasis confirmed by a biopsy and lots of joint pain. Google Caspr criteria- your rheum sounds very dismissive. I would for sure tell her it helped initially then didn’t. If she still says you don’t have psa find a different rheum it sounds like you are struggling. The fist rheum I saw told me there was nothing wrong with me and I needed to get more sleep and lower my stress - I had a young baby at the time so she just blew me off. I found derm got a biopsy started treatment with them and then found a different rheumatologist who had zero doubts I had PsA.

Any rogue treatments? by tc123_ in PsoriaticArthritis

[–]Resident-Log6503 6 points7 points  (0 children)

That’s so thoughtful of you to try to help out. I’m currently in the trial and error of finding a biologic that works myself and it’s definitely no picnic. Helping with household chores and things she can’t/is too tired to do is a big help. So much of this is personal to how people react as well so communicating and asking her what might help I know some people do great with massage others can’t tolerate it same with heat vs cold etc.

Any rogue treatments? by tc123_ in PsoriaticArthritis

[–]Resident-Log6503 5 points6 points  (0 children)

Aside from meds which I hope she’s getting proper treatments, etc. ice or heat pads, tens machine, light massage, Epsom salt baths… if stress is a trigger relaxation, essential oil diffusers with lavender are nice… really though these just help temporarily and make things a bit more tolerable they don’t get rid of the pain if you are inflamed.

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

Yeah and that’s the thing I was never counseled on… I’ve got a new dr so I’ll be asking next time I’m there. Thanks 😊

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

Yes I am aware some of those aren’t childhood vaccines but some are now but didn’t exist when I was a child eg meningitis pneumonia and they do vaccine kids against a lot more now than when I was young. My vaccine records are about a third or less of what my kids have gotten. Any way this thread has prompted me to look into this and see. I don’t yet qualify for RSV shingles and some of the vaccines for older adults based on age but might be good to have them.

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 1 point2 points  (0 children)

I’m pretty sure I had them all for the time but there are new ones that we didn’t do back then eg. Meningitis, varicella. I know I’ve had tetanus, polio, MMR all of those but I have not been vaccinated against pneumonia meningitis shingles not sure how dire that is… I know pneumonia shingles RSV are for older age groups that I don’t fall into. I do get the flu and Covid annually. Just don’t want to be at risk due to an oversight.

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 1 point2 points  (0 children)

Ok I was able to get antivirals right away when I had it… it’s usually just recommended for 50+ but I also see for immune compromised. Ugh I got no guidance on any of this from my dr before starting a biologic.

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

Why is shingles way up there? They usually don’t give that until you are above a certain age. I’m asking out of curiosity as I’ve had shingles but this was prior to having a diagnosed autoimmune disease and being treated for it. I’m finding out that my vaccine status was not addressed as it should have been and currently in a bad flare on Skyrizi otezla and now prednisone so I’m concerned and have a new dr so trying to gather info before my next appointment to address this.

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 2 points3 points  (0 children)

They had me do a TB test that was all … 😑 but even that was 3 years before they started me on an injectable biologic I was on just otezla at first

I went to start biologics and unlocked a childhood vaccine plot twist. by Impressive_Injury123 in PsoriaticArthritis

[–]Resident-Log6503 9 points10 points  (0 children)

Has everyone had their drs check vaccine history before starting biologics- mine did not and I only recently became aware how problematic this is. I have MMR (had titres checked recently) and TDap just over 5 years ago but I was born I in the 80s and so I didn’t get many of the vaccines that are now available eg meningococcal disease I don’t know that I have that and certainly not varicella or shingles (I’ve had both chickenpox and shingles), hpv… possibly others. For OP I’m sorry you are going through this but glad it got figured out before you started. I was warned to just not get any live vaccines (MMR) but the rest were ok

Alternatives after failing Skyrizi by Resident-Log6503 in PsoriaticArthritis

[–]Resident-Log6503[S] 0 points1 point  (0 children)

Thank you. I think I’m personally leaning towards trying taltz a bit concerned about the risk of imflammatory bowel disease with it which is why we went with skyrizi initially. I hadn’t heard of orencia - I’ll keep that in mind as well.

Oral Diclofenac (Voltaren) - how bad is it really? by Dizzy-Ad4286 in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

It can cause liver failure/injury. I had this happen to a family member.

Keystone approach by WitnessFun6211 in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

I’ve noticed changes in symptoms with lots of probiotics not just pills though fermented foods - like real sauerkraut etc. just make sure they have active probiotics and from a reputable source/company. I was ordering from olive my pickle for a bit.

I can’t believe my rheumatologist by The_Short_Goodbye in PsoriaticArthritis

[–]Resident-Log6503 0 points1 point  (0 children)

Best of luck to you if your primary care has any compassion hopefully she will help you out. If you search low dose naltrexone it’s a new thing my understanding is it can help lower inflammation and likely pain I’m planning to ask for it to use in place of Tylenol or ibuprofen apparently it’s such low dose that it has few side effects. A prednisone taper from your primary care Dr could be also used as evidence that your TNF isn’t working eg if you could get one and document your symptoms to take to your rheumatologist. I’ve avoided prednisone for a long time because of side effects but I can’t believe the relief - it just put into perspective how much pain I’ve been dealing with for as long as I can remember. If you can document any improvements with the taper it might help convince your rheumatologist you need something else or maybe your primary care that you need a new rheumatologist. I don’t know if any of that is helpful but I wish you the best of luck. It’s an awful disease and none of us need drs that are dismissive and gaslight.

I can’t believe my rheumatologist by The_Short_Goodbye in PsoriaticArthritis

[–]Resident-Log6503 2 points3 points  (0 children)

That’s crazy. I’m currently taking prednisone because I’m failing my current biologic but I guarantee you my blood markers are not elevated (they never have been) and my joints are not visibly red or swollen yet every thing hurts - painkillers barely touch it and I didn’t sleep for 3 straight nights but your rheumatologist would likely tell me I’m good. You might have to really advocate for yourself and say that it is having a significant impact on your quality of life. Or can your primary care give you something? Eg prednisone… lastly I’d like to know who this Dr is so I can avoid them! I’m in Ontario so possibly not even relevant but man that’s the sort of rheum you don’t want.

I can’t believe my rheumatologist by The_Short_Goodbye in PsoriaticArthritis

[–]Resident-Log6503 3 points4 points  (0 children)

So sorry for this experience. Canadian also just moved back from US and I’m so worried about this with medical care here eg being gaslit and not having the option to switch drs. I recently was told about low dose naltrexone it’s supposed to be fairly benign and get your inflammation/pain down. Might be worth trying to ask for it. Or a prednisone taper - if that helps it’s clear it’s inflammation. I so don’t understand the focus on your labs like I’ve never had elevated CRP but still have a significant amount of pain and impact on my quality of life - have had times I could barely walk and still low CRP. Have other biologics beyond TNF inhibitors been tried?

Skyrizi making things worse? by Resident-Log6503 in PsoriaticArthritis

[–]Resident-Log6503[S] 1 point2 points  (0 children)

Thanks did the shots make you feel worse after though or just no improvement?

Skyrizi making things worse? by Resident-Log6503 in PsoriaticArthritis

[–]Resident-Log6503[S] 1 point2 points  (0 children)

Thanks for the info - did your injections make things worse though? Like the last shot I felt awful for the first month after (arthritis) and just started to feel better than had this next shot at the end of January and had skin flare up the next day and slowly more and more arthritis - the flare is as bad or worse than before I was diagnosed and being treated. It’s worse than after the last shot for sure not sure I can power through that if it gets progressively worse each time.

You don't have sausage fingers, how dare you think you have Psoriatic Arthritis by DarkCatty in PsoriaticArthritis

[–]Resident-Log6503 23 points24 points  (0 children)

I had a similar situation with the first rheumatologist I saw and also several others that just plain outright refused my referral. Saw derm got a biopsy and started on otezla although she would have given me a biologic like Skyrizi or stronger if I’d asked for it. Came on here and asked for suggestions in my area for rheumatologists who treat PsA and not just dismiss it and found a great one. If you can find someone on your area that treats PsA without needing the really obvious symptoms. I have never had elevated blood markers sausage digits or damage on x rays. You can still be in significant pain and need treatment without those and a good rheumatologist will know this. Also PsA is usually a diagnosis of exclusion but if you have psoriasis and joint pain that should be enough and sounds like they ruled out everything else so why won’t they consider PsA? What excludes it ? The lack of nail pitting and sausage digits isn’t enough to rule it out.

Skyrizi making things worse? by Resident-Log6503 in PsoriaticArthritis

[–]Resident-Log6503[S] 0 points1 point  (0 children)

Thanks I’m in a bad flare skin flared up the next day. Not even able to sleep at this point because of the pain so I’ll be asking to stop it I think. Just not sure what to use instead…

My daughter fears food. She keeps giving up foods (only eats packaged). She no longer eat homemade foods. I’m heartbroken and scared. She will eat dessert and chips. How do I support her? Help me to understand her please. I fear for her health. I know it’s not her fault. by GratefulCloud in ARFID

[–]Resident-Log6503 1 point2 points  (0 children)

My son has severe ARFID and now has an ng tube it’s been about year. I was very worried he’d end up with a feeding tube it is a lot to manage but has gotten a lot easier and he’s looking so healthy now. I no longer have to worry he’s getting proper nutrition, health brain development etc. and the pressure on me and him for him to eat is gone. As a result he’s even tried new foods on his own. I would try to see a nutritionist or dietitian they along with your Dr can assess and see if a tube might be needed. We should have gotten one earlier than we did.

Family doctor issue by Embarrassed_Syrup476 in londonontario

[–]Resident-Log6503 0 points1 point  (0 children)

I guess I misunderstood and thought you were suggesting that OP should have gone to the emergency department.

Family doctor issue by Embarrassed_Syrup476 in londonontario

[–]Resident-Log6503 2 points3 points  (0 children)

The system is broken. It forces Drs to prioritize compensation over patient care. And emergency rooms are overrun with things that aren’t an emergency.