Regardless of whether it is scientifically valid or not, I think of myself as a ‘PsA type’. It’s a genetically-based disease so my genetic stuff, all me wotsits, have PsA running through them presumably. I can tell you’re all massively impressed by my grasp of this.
So, um, I imagine some of the ailments and issues I’ve had over the years may have nothing whatsoever to do with PsA. But some may, in some way, be linked. What I’m saying darinfan is that your mouth ulcers could, possibly, stem from the same immune system blip that lead to PsA.
Sybil, I’m always impressed by everything you write. I think you’re correct in saying “PsA type”. The older I get the more I feel that. Looking back over the years and comparing myself to my siblings, none of them had PsA and none had the “little” health issues I’ve had over the years that didn’t necessarily seem PsA related. So, maybe yes, you’re on to something here!
I hope you had a good nap!
I took my Enbrel last night—my fingers were starting to feel weird. Might have been nothing, but I didn’t want to take any chances. Hoping my cough fizzles out.
Sadly my sinus infection seems to be getting worse, so trip to GP on Monday. Had a fright this morning when I blew my nose and then coughed up a bit of blood. Took me a while to figure out it was just that the sores in my nose had been bleeding in the night and had trickled into my throat. Haven’t coughed all day and no catarrah, so am putting it down to that to keep it sane. Mum has that quite a bit, and my nose seems to bleed a bit each time I blow it so it makes sense. But some form of straightforward opening to the new year would be a start! I went to the local walk-in centre just to get it checked today, but was told the wait would be three hours, and I decided I was more like to catch more germs sitting in such a crowded place with lots of ill people so came home and have sat watching Perry Mason all day - my Perry Mason is my equivalent of comfort food. He kissed Della Street tonight. I was quite shocked!
Darinfan, I hope your sinus infection clears up—maybe by Monday you’ll feel well enough to not have to go to the doctor. But, then, maybe it’d be good to go on an antibiotic to stop the infection.
I took my last Azithromycin pill this morning. I took my Enbrel yesterday because I was so worried I’d get PsA symptoms. As it was, the psoriasis on my legs was itching so badly I nearly went nuts and for about 3 days I couldn’t stop scratching it until it bled. Now the itching has let up—hopefully that means the Enbrel is back to work!
I hope you can go back to your injections ASAP and that sinus infection doesn’t give you too much grief!
To be honest, I don’t feel ill with it. It’s just a pain in the rump. I had a rough time for about three or four hours tonight when it felt like it was going to turn to flu, but then I felt fine afterwards. I went on the online booking for my GP tonight and that appointment was sitting there for Monday - no others for another ten days. Obviously there had been a cancellation. But I feel it was waiting for me, so I shall go either way. I should check in anyway because of the bipolar - they like to make sure I don’t go mad or something! I’m not due my benepali until Tuesday. I’ll see how I feel then. Otherwise I’ll just hold off for a few days until I am and then start weekly from then. If it means taking it on Saturdays instead of Tuesdays, that’s not a problem. Probably better for me in many ways! I took them last week and so hopefully missing one won’t cause too much hassle, especially as they worked the day after the first one! Hope you feel better soon, too! If not, I recommend Perry Mason!
LOL it’s The Incredible Doctor Pol for me! I’ve watched about 40 episodes this past week…somehow it intrigues me how vets can pull calves out and all the other cool animal doctor stuff they do!
For sinus infections have you ever bought some ecalyiptus (spelling) put some in a bowl of hot water and inhaled the steam through your nose? I suffered sinus infections often and that always helped comfort wise if nothing else. Seemed to dampen down the inflammation. Just a thought.
Hey Jen. I meant to reply to this ages ago, but kept forgetting and then couldn’t find it. My Mum was diagnosed with MGUS 21 years ago - although I can’t tell you which form of it. Mum’s was detected by mistake too - and she has always wished they never found it, because then she wouldn’t have to worry about it every six months when the blood tests come around.
During those 21 years her paraprotein numbers have ranged from 13 to 21 - and currently sit at about 19, which is a bit higher than I would like, but it’s been steady again for a year or so. But they do seem to fluctuate quite considerably. And one high result (such as the random 21 five years ago) can just be a random spike, it seems. She was tested again after three months and it was back to 17. She’s more worried now as she is on restricted fluids due to her heart condition found at the end of last year, and they have always told her to drink lots - but in the end, with undiagnosed heart failure, that advice nearly killed her!!
But what I’m trying to say is that, while everyone is different, I can vouch that there are many people with it out there with MGUS who never have any problems with it at all - beyond the fright of the test results each time! I’ve spoken to my own GP about it when I’ve been worried about her and what it could lead to, and he said he has never had a patient where it has turned into anything beyond MGUS.
Yep - I’m at the stage where I know there is a possibility, but it’s mostly the annoyance of the blood tests and docs visits. Next time I’m going to ask if I can just get the test done, and every second time miss out the time consuming specialist visit.
You are right about the spikes in the M protein often being just that too - I looked up how they measured it, and as a scientist in a different field, I’d describe it (particularly in my case where it overlaps with a natural beta protein) as semi-quantitative at best (“comparative” at worst).
I do have 10% plasma cells, which puts me right at the top edge of MGUS, but nothing on MRI. Interestingly, it seems there is a raised incidence of MGUS, but not myeloma, in RA patients, so there is some conjecture that autoimmune diseases are linked to MGUS.
Me being the optimist I am, I can’t help but take the speculation a bit further, and hope that because MGUS instances are raised, but myeloma is not, that the type of MGUS we get is far less likely to convert to myeloma.
So like @Jon_sparky says, it’s the good type of cancer!
I hope everything remains stable for you. Mum had to go to the specialist for the results for the first couple of years, but now they give her a one hour slot on a specific date when a nurse (I presume) phones her with the test results - she has to arrange for the test to be done at the GP’s two weeks before that.
Well, GP says that the sinus infection has basically cleared up by itself and all I’ve got now is the after-effects. But I have been wanting to change my injection day to Friday anyway, and so that’s what I’ll do this week to be on the safe side. Kill two birds with one stone, but hopefully not me as well!
Well since I have already been diagnosed with Waldenströms, it will just slowly progress, taking over my bone marrow. The disease thickens the blood and causes neuropathy, but usuallyy doesn’t effect peoople untol they are in the 70’s, anyway they have expensive drugs I can take, so I will be supporting Big Pharma till death do us part!
survived my trip to get my Remicade infusion, I wore surgical gloves, mask and brought alcohol wipes. Got some funny looks in the elevator, but didn’t get the flu!
It was funny, when I showed up at my doctor’s office in the 10 story building, there was plastic on the door, said “temporary move because of accident” turns out, over the holiday, the office got flooded out, from the floor above! they had to move all the supplies upstairs to another office, completely remodel the offices. They also do allergies, the contractor wanted to keep the soiled carpets, but they are going to put in hard floors, I mentioned how allergic I was to new carpet!
My doctor actually got to see my hands when they were blown up like balloons, so she is starting to believe me…
I was wiped out after this infusion for the whole next day, just stayed in bed, that was the first time it hit me so hard, maybe because I had just restarted MTX after my surgery.
Hi Grandma_J
Yes I’ve had bronchitis. Sorry if I’m late to the party on this but as you know I’m new to this forum and dipping in and out reading topics! I’m in the UK and we’ve got three different flu types and awful cough/cold viruses sweeping our island, hundreds if not thousands of people are infected and our hospitals are struggling to cope. Very scary when you have PsA and on immunosuppressant drugs! On the advice of my doctor I had both the flu jab and another pneumonia jab back in October but within a few days I became really unwell. The day after the jabs I was really ill and suspect that my immune system went haywire dealing with both vaccinations whilst on Methotrexate! Anyway, after three weeks of coughing I was told to miss a Methotrexate dose, after another week I was getting much worse and told I had bronchitis and given antibiotics and told to miss another Methotrexate dose. I really flared! Quite badly. But my Consultant said he thought the chest infection caused some of that flare as well as missing two doses. Any infection can, as you probably know, cause it’s own inflammation in the body, then oops!! Up pops a PsA flare! I got over that but even after weeks back on Methotrexate I still hadn’t recovered my reasonable state of mobility that I had before the chest infection. Then on Christmas Eve I started with another cough/cold/flu type infection that is almost gone now after three weeks plus. This time I battled on without needing antibiotics and without missing any Methotrexate doses. It’s tough! I knew I didn’t have a chest infection this time otherwise I’d have got the antibiotics and stopped the Methotrexate.
I guess what I’m saying really is that we seem to have an epidemic of these winter bugs over here too, and we PsA sufferers are more vulnerable than most to catching them. I’ve always had what I consider to be a strong immune system and my illnesses have been few and far between and shaken off quickly until the last six months since diagnosis and going on Methotrexate - but without it my PsA flares!
I’m now off it for four weeks before starting a biologic (we’ve already spoken on another thread about the clinical trial I’m going on) so it may give my immune system a boost to finally get over this flu, even though I’m sure to get increased joint pain! Ha ha what a merry go round we live on ️
Wow, Katie! Nasty, nasty stuff! Geez! I’d be depressed!
I guess I can consider myself really lucky—I’ve had bronchitis for almost 3 weeks now, but it’s down to an occasional coughing bout, and it’s a dry cough. I’ve had no problem breathing since the start of the second week. I only missed one Enbrel shot. I really have a good immune system, even with my low white blood cells! (Knock on wood!)
So sorry you’ve had to go through all that. I know they call some of it the 100-day cough, but wow—your cough is pushing the limits. I hope it all works out!
Yes, there’s lots of flu and bugs in the UK. In my part of the country it seems to be sinus infections more than flu. GP says I don’t have that, but I’m congested anyway - but the biologic can cause that!
I think you’re correct in saying “PsA type”. The older I get the more I feel that. Looking back over the years and comparing myself to my siblings, none of them had PsA and none had the “little” health issues I’ve had over the years that didn’t necessarily seem PsA related. So, maybe yes, you’re on to something here!
and we’ve got three different flu types and awful cough/cold viruses sweeping our island, hundreds if not thousands of people are infected and our hospitals are struggling to cope. Very scary when you have PsA and on immunosuppressant drugs! On the advice of my doctor I had both the flu jab and another pneumonia jab back in October but within a few days I became really unwell. The day after the jabs I was really ill and suspect that my immune system went haywire dealing with both vaccinations whilst on Methotrexate! Anyway, after three weeks of coughing I was told to miss a Methotrexate dose, after another week I was getting much worse and told I had bronchitis and given antibiotics and told to miss another Methotrexate dose. I really flared! Quite badly. But my Consultant said he thought the chest infection caused some of that flare as well as missing two doses. Any infection can, as you probably know, cause it’s own inflammation in the body, then oops!! Up pops a PsA flare! I got over that but even after weeks back on Methotrexate I still hadn’t recovered my reasonable state of mobility that I had before the chest infection. Then on Christmas Eve I started with another cough/cold/flu type infection that is almost gone now after three weeks plus. This time I battled on without needing antibiotics and without missing any Methotrexate doses. It’s tough! I knew I didn’t have a chest infection this time otherwise I’d have got the antibiotics and stopped the Methotrexate.
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