I turned up positive for Covid Wednesday after taking an LFT despite living like Howard Hughes (minus the bank balance) for two years. I am on Methotrexate, Prednisolone, Hydrocortisone and Tocilizumab yet despite that lot throwing the gates wide open in terms of having any immune defence they are some of the best at preventing Cytokine storms that kill people. This will be an interesting journey and thus far I have experienced what I would call a medium-mild cold at what I estimate is day five since in hindsight I was having symptoms. I am taking my temperature twice daily and also have an oxygen blood saturation monitor that is easily obtainable from a well known American home shopping website. I sent off a PCR as instructed more than 48 hours ago and heard nothing so if I do manage to get any anti viral medication I will probably have mutated into some hideously repulsive alien life form by then, so much for that. I will inform of my progress.
Covid.: I turned up positive for Covid Wednesday... - PMRGCAuk
Covid.
Sorry to hear you have Covid despite all your best efforts to avoid - hope you make a quick recovery
Just shows how easy it is to get Omnicron doesn't it!! Get well soon
I'm sorry to hear that despite your best efforts, you have Covid. I hope it stays relatively mild and you won't need yet more medication.
On that note, have you heard back from Sajid Javid about the ending of the Tocilizumab allocations?
Get well soon.
Not a word, but I wasn't expecting it, I mean I'm only a constituent.
So actually his employer even if you didn't vote for him ... Don't think they think of it like that though!!!
Two questions:1. What is the name of the well known American home shopping website 🤣🤣🤣🤣
2. Have you turned into the giant squid that ate the crew of the MarieCeleste yet?
On a serious note, how are you feeling?
In terms of representative descriptions of the mutated form I am likely to take I find novels by HP Lovecraft to be the best guide. At the moment I have pain when I cough which is currently situated in the tracheal area and am producing thick coloured mucus. I contacted 111 and chased up my PCR as it didn't seem I was going to hear anything and they took notes and told me to get back to my Gp. who would then refer me to the Covid management team. This was done and a Dr contacted me who upon discussion did not feel I was ill enough to warrant anti virials (I am not sure how ill you have to be until preventative intervention is initiated, probably when it is too late to be effective) but I would be contacted by another professional in order that antibiotics can be prescribed, that was earlier today and am still waiting.
I assume , you also don't store your daily urine production around the living room in milk bottles like Howard Hughes either!
What lousy luck you have .
It might be wise to contact your GP or Rheumatologist , remind them of the drugs you are on whilst suffering from Covid and ask them to check whether you should be one of the patients whom is automatically given the available courses of antivirals or new Covid drugs.
Your symptoms may not be severe at the moment , but you want them to stay that way so using the available meds may well be beneficial to you and prevent the need for a hospital treatment , which I am sure neither You , or Howard Hughes , would have appreciated.
Look up the breathing exercises for Covid online in the meantime as these can help reduce breathlessness and speed up the feeling of recovery.
take care , Bee
Under my own volition I contacted 111 and was pushed through to the Covid management team by my Gp. I discussed it with there Dr who did not feel I was ill enough to warrant anti viral medication but would be contacted by another professional who would organise antibiotics, that was around eight hours ago and nothing. I am not sure how ill you have to be to get preventative intervention I thought unless it was timely it becomes ineffective but as I so often find with "Initiatives" when you get past the soundbites and grandstanding the reality is full of caveats and revisions so never assume anything is automatic
Unfortunately, they still haven't cottoned on to the possibility that giving people with certain chronic conditions the medications before it gets worse would probably cause them not to get so ill that they have to go to hospital... the cost and the availability of the medications will have something to do with them not choosing these preventative decisions too, I suspect.
I would say keep an eye on those oxygen levels and your breathing and any chest pain or lightheadedness , if you find they are getting worse that's when you call immediately for more help. If you don't get a response about the antibiotics and get to speak to the person whom should be assessing you chase them up.
Agree completely, despite all the political fanfare and noise the NHS has evolved gatekeeping "Initiatives" to a very high degree. Thanks for the advice, it just shows us that we are our own "care co-ordinators" and unless YOU start managing things it can often just drift.
Absolutely , although managing your chronic condition does start to feel like a full time job because of it. I think I'm CEO of " If she was a horse they'd have shot her by now"PLC!
😂😂😂😂
I thought the whole point was to give the new treatments *before* things got bad.
Uncharacteristic prescience was shown in getting the Astra Zeneca vaccines early, we cant count on that kind of rational forward planning to go much deeper until, as I said in another post, we return to our tried and trusted way of patiently waiting until the Horse has bolted and then hysterically chasing after it.
I received a letter at end Dec 2021 offering ‘new treatments’ should I develop Covid 19 symptoms. I took PCR test yesterday and got confirmation today that I am positive. I have contacted my health board as advised and am awaiting to discuss my current medication and the most appropriate treatment for me - whether intravenous or tablet. My other concern is that I had started trying to taper - again - from 4.5 to 4mg - but not sure I should in circumstances so staying at 4.5. Hoping ok?
No - no more taper for now!! In fact - Sick Day Rules should apply when you are at a low dose and develop an infection of any sort.They are in the FAQs and the Pinned Posts
I have also been on a taper reducing Pred whilst I transfer to the less brutal Hydrocortisone but whilst suffering Covid I have left things as they are until I am clear as I don't need the kickback I get from reducing on top of Covid. I am on the third day of antibiotics and the 5th since turning up positive. The infection seems to have stayed in the upper respiratory tract which is typical Omnicom, it hasn't the legs to get well into the lungs which makes it less severe but more infectious. I feel as if I am over the worse but am still producing coloured mucous but the cough has not been wracking and continuous throughout but painful. I think it would be utter hell to have Delta and have this constant cough with that kind of pain and all the other symptoms. People who do not get vaccinated are utterly deranged and should just carry on casting the Runes and praying to Wotan a long way away from me thanks.
I'm not sure why you describe hydrocortisone as less brutal. It is a weaker in terms of antiinflammatory effect and has a far shorter half life so you need a higher dose and more doses per day but its adverse effects can be exactly the same as pred and I know a few people who were switched to it to encourage return of adrenal function but asked to go back to pred because they couldn't cope with the side effects.Get well from Covid quickly!
I was told by the Ophthalmologist that it was an all round gentler option than Prednisolone over long term use as Prednisolone causes Cataracts and diverse other enormities. I wasn't expecting Hydrocortisone to be a clean alternative just less harsh so that was my interpretation from what he said, I'd rather be on nothing but the Tocilizumab will be getting stopped soon so there has to be something. What is the rational in giving Tocilizumab short term? Is it meant just to drive GCA into remission only or is it also indicated for long term maintenance but cost forbids it? Tocilizumab has given me a security blanket I don't want to loose.
Wonder if he has ever tried either of them! Corticosteroids all have similar effects - that there are fewer cataracts associated with HC use probably reflects it is used a lot less!
Despite some contrary evidence I still cling on to a forlorn hope that some of these clinicians we meet can provide care guidance that actually meets their description and our subsequent experience of it.
I have just been to local hospital for the infusion treatment for Covid 19 mentioned in the letter I received - will see if it makes any difference tomorrow. It seems it is because I have been diagnosed with MS in the past.Do you think I should increase pred in the meantime? I am reluctant to do this if at all possible. I was a 4mg a year ago and increased because of UTI and it has taken so long to get back there. Any advice is very much appreciated. Thanks
See how you feel - you may be fine without going up but it needn't be more than a week anyway and you can drop straight back to 4mg.
I am feeling ok apart from the Covid symptoms for Omicrom - runny nose, coughing etc. PMR side seems fine at moment - getting tired earlier but this may be the Covid - who knows! I think I shall try to stick at the 4.5 - but I now know it would be ok to increase if necessary.
Oh get well soon AmcientMariner! 💐
Sorry to hear that, I also tested positive yesterday and called the helpline number provided on the NHS letter sent to me. I have an appointment today for antibodies infusion-I was told they give the treatments within 5 days and when symptoms are mild to prevent worsening . My symptoms are fairly mild, sore throat, slight chest tightness and runny nose. I am on 15mg prednisone and Tocilizumab for GCA. I live in Scotland. Get well soon
Hi I am in Fife and similar to you - tested positive yesterday - have NHS letter so am now waiting for call back to discuss current medication and which new treatment is suitable. I would be interested to learn how you get on. I also have both PMR and GCA and have been on prednisolone etc for 4 years.
Hi Jantayl, I missed your message back then- only found it now. I got on fine with the monoclonal infusion and had a very mild dose of COVID, not sure if the infuion stopped it getting worse. However my GCA symptoms have increased and I can't taper down from 15mg,- I am supposed to be on 12.5 now but have symtoms. I am not sure if the flare is connected. I have been on Prednisone for nearly 2 years and Tocilizumab for one year. I did manage to get down to 7 mg at one point so it is frustrating that i am back up again. I hope you are doing OK and got over COVID.
Only half of patients with GCA are able to get off pred altogether - and the pred dose is required because GCA can have at least 3 underlying causes. It all depends on that bit.
Thank you. I realise I may never get off Prednisone and I have been told by my Rheumy I am likely to be on a low dose for the rest of my life. I can accept that, but would like to somehow get down to that low dose! I tried reducing from 15 slowly down to 12.5 , but back up again. I am interested in the potential underlying causes you mention? - in case there is something I am missing. Thanks
There are 3 different known mechanisms for the inflammation found in GCA. Tocilizumab is what is called a biologic drug and they are extremely specific in their action. It targets the production of the cytokine IL-6 - and nothing else. That is the most common or main way the inflammation is created and if you have GCA that is just caused by that, then you will get off pred altogether. But in half of patients the inflammation is caused by these other two mechanisms and the tocilizumab has no effect - pred is required to control that inflammation.
Most people who have GCA do eventually get off pred altogether - we have the impression that 4 to 5 years is the time it takes to for the majority of patients to go into remission and get off pred. Tocilizumab just speeds the process up a lot for half of patients. But all patients get to a much lower dose of pred and eventually you are likely to get off pred altogether.
I can only assume that the criteria for treatment is tighter in Scotland as I have all that and am in some pain when I cough and am only felt suitable for antibiotics which will have no effect on a viral infection. To have the anti body infusion sounds like Eldorado to me, I need NHS Scotland.
Hope it’s not too bad…I’m assuming you received the email before Christmas & the priority PMR home test kit. But it sounds as if that system isn’t working, so that’s no good. Will be interesting to hear how you get on, please, & I hope you get help soon!
I did 12 hours later when I got on the phone to 111 again and went through it all over with a different clinician on the Groundhog day helpline.
Good news, but you shouldn’t have to ‘work’ like that when you’re sick!!
How are you feeling now? Have you got the PCR results?
See below, i forgot to press the reply button.
I have had to recontact 111 after waiting twelve hours for someone to contact me regarding antibiotic treatment (whoever I spoke to at the Covid management team did not feel I qualified for anti virals and said someone would contact me regarding this). I went through the same process again and managed to speak to a Dr who spent real time listening and sent through an electronic prescription for anti biotics whilst I was on the phone. This is like being in a game of Snakes and Ladders but most of the ladders have been removed, you really have to be assertively pro active with this lot.
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