Just a thought

What’s going to happen about monitoring us ?I’m due a blood test after starting my biologic

[GranAmie]

yep, have the same puzzle, due for bloods nxt Thursday but can't check if on til Monday morning.. . I have been ok so f ar , this is my 3rd year so think hitch hiker 'don't panic ? xx

[AgedCrone]

Check with whomever arranges your blood tests, usually you are only contacted jf your blood test shows a problem.

They will be very busy....so be patient l

[Hidden in reply to AgedCrone]

That’s my Gp ... only taking emergency calls at the moment 🙄... I’ll count to ten 😁

[AgedCrone in reply to Hidden]

Go in & ask in reception ! Write a note + your email address in case you can’t get an answer straight away.

We are all going to have to make a bit more effort I’m afraid.

This is a once in a life time situation ...we hope....so it’s all hands on board ...can’t leave it all to the medics can we?

[Hidden in reply to AgedCrone]

Yes gonna have to think of something. Notice has been sent out do not visit the surgery.. might have to be sneaky and go through the prescription secretary

[AgedCrone in reply to Hidden]

How about writing a letter & posting it?

Quaint old fashioned is handy sometimes!

[Hidden in reply to AgedCrone]

Never thought of that .. life has just been too easy for us we’ve been spoilt

[helixhelix in reply to AgedCrone]

Great!!!

[Neonkittie17 in reply to AgedCrone]

That’s what I usually do when I don’t want to hang on the phone for ages or go in to a generally germy reception. Write them a letter.

[AgedCrone in reply to Neonkittie17]

Yes it does seem the way to go doesn’t it?

[Neonkittie17 in reply to AgedCrone]

Yes they need all the help and cooperation they can get.

[Lolabridge]

Good point. I’ve an appointment with nurse at beginning of April and need to get blood tests beforehand. I wonder if those will happen?

[AgedCrone in reply to Lolabridge]

Be proactive.....get your blood test form & make your appointment .

All qualified nurses will be needed to look after very sick people.. ..the least we can do is help out.

[Vixen2]

Hi J1707. I think we’re all up in the air at the mo. I’m in my 40’s, i’ve had R/A since my 20’s. Been on Infliximub for 15yrs. Meant to help my Uveitis aswell. Had the worst flare up in 20 yrs recently, as i was advised to use Humira instead. (Was bedridden for 3 months). That gave me the ATROCIOUS FLARE UP. Thank God i’m back on Infliximub. But i’ve had the most awful cold the last week. My temperature’s been up & down all the time. (But i’m also going through the peri menopause!!!) Plus i have a chesty cough. So i’ve been feeling quite low. I live in Central London. I was panicking a bit when i had to go out for food. Was worried there’d be no bread. (I love my food). Eventhough i can’t bloody taste anything. So annoying. Thank God there was food. Whilst walking to the shops. (I went out late. 11pm so as to try & stay away from people). I thought of Russians queuing up for hours for bread etc. I thought how awful it must have been during the 2nd World War here. All the rationing. Not knowing what you’d find on the shelves.

I’m worried that i’m going to have to cancel all my med appointments. I’ve got 5 in the next few weeks. Plus an appointment at the Ear Nose & Throat Hospital. I’ve waited 6 months for that!! I’ve lost some hearing in my right ear. So i’ve been keen to go to this appointment. But it can’t be helped. My uncle has been told he’s got the evil c word. He’s having chemo tablets. Plus he’s due to have an operation. So he’s got more to worry about!

I think most people are quite anxious at the moment. I haven’t been able to go to one of my local boozers! That’s driving me mad too. But my usual feel good tip. Get a treat, lovely hot cup of tea & get the radio/tablet on. I had a magnum in bed. Cheered me up ad i got the wrapper off. But of course. I couldn’t bloody taste it. Still. The ice cream was nice & cool. Good luck everyone. Let’s hope we get some normality soon x

[Peacox in reply to Vixen2]

I’m sorry you’re having all these hardships. But I love your positive attitude. I’m in a state of grief right now, as I’ve lost a good friend, so on top of the madness, it just compounds the awfulness. But thank you for this, you’re a breath of fresh air to a worried and grieving soul. I hope very much that you feel better soon.

[Vixen2 in reply to Peacox]

Hi Peacox. (Thanks for the compliment by the way). So sorry you’re having an emotional time. I know how awful grief can be. It can consume you. I’m dreading mother’s day. ((Next Sunday). This will be my 3rd mother’s day without my lovely mother. (She died of cancer in 2017). She was my best friend.

I live in Covent Garden. So alot of people come here for a good time. (Especially ALOT OF MOTHERS & DAUGHTERS!!) The last 2 years i’ve been deliberately not setting foot outside on that day. With this virus, maybe there won’t be as many mums & daughters out on the street this year. (I’m glad!!) i’m going to buy a load of naughty things for that day. My mum had a very sweet tooth. So i’ll cram my fridge with her sort of stuff. (She loved those fresh cream slices from Sainsbury’s. Plus they used to do an amazing Victoria sponge in Asda. Loads of cream oozing from the sides & generous jam!!) But i’m sure it’s the cut backs, we both looked at eachother in despair when we went to Asda one day for our ‘fix’ only to be greeted by something that looked too pathetic to eat. What a let down. You can’t even rely on a bloody cream cake!!

Sorry about your friend. Everyone’s in a strange mood at the moment. Plus if you have emotional baggage too, it can really take over your mental wellbeing. I love to sing when i’m low. Is there a type of music your friend liked? You could make a list of songs. Might help you feel closer to them. (With a cuppa & cake). Good luck x

[Peacox in reply to Vixen2]

Bless you. Thank you. X

[Hidden in reply to Vixen2]

Good grief you really have had a bad time. I found a recipe for no knead bread .. so easy and delicious.. hope you feel better soon x

[Vixen2 in reply to Hidden]

Hi J1707. Thanks for your reply. It really makes a difference when people give a few kind words. I love my food! Even something as simple as bread. (Best when it’s warm!!) with some lovely soft butter & fresh cheese. As always. Don’t forget a cup o tea. Or a big bowel of soup. I’ve found the tastiest spicey red pepper & lentil soup in Sainsbury’s. Fantastic flavour. Bought a tub before i got this cold. Gorgeous. But now. All i can taste is the heat!! I was imagining if i was some great up & coming chef & i lost my taste buds!! What a tragedy that would be! But there are enough poncey chefs out there. Enjoy you r lovely bread x

[Angjoplin in reply to Hidden]

Can you share the recipe. I do miss baking as much as I used too.

[Hidden in reply to Angjoplin]

Google no knead bread it would be quicker than my typing 🙄

[Angjoplin in reply to Hidden]

Thought you had a specific recipe. Sorry to bother you. 🙄

[Hidden in reply to Angjoplin]

No your not bothering me I was in the car. And trying to reply quickly as battery was dying🙄there’s a video also to show you.. its fool proof has to be for me 😁if you make it let me know how you get on x

[Angjoplin in reply to Hidden]

Thank you

[Peacox]

Good question. I have cancelled my appointment with the Rheumy nurse next week. They’ve pushed my blood test back a week. I did it through central booking because try as I might I couldn’t reach the rheumy via the direct line. There’s no way I can get to the hospital. I moved away from that area and I have to take a bus, a train and a tube to get there. I don’t have my own transport. I’m not doing that with my low immunity. In a taxi it would be a £60 round trip. That’s not doable for me. No idea what will happen. It really is a good question.

[sylvi]

Well I pay £10 for a nurse to come to the house and collect my blood have been doing it for a while and I have to say she is so worth her money. What with parking fees they are and time spent waiting to have blood drawn it works out much the same. xxx

[TheBoys]

Crikey,i wouldn't want to go near a clinic just now. I d wait a few weeks

[Bailybiscuit]

My brother in law had his blood test last week. He went to collect a form. There was just a phone with a number to call. He called the number and answered questions then someone came and gave him the form. We can get bloods done at a nearer practice, so he went a long. (Earlier he had a phone call asking him the same health questions. ) At the locked door he had to ring a bell and go over the same questions. Once he was let in he had hand sanitizer squirted on his hands twice at each door, then he saw a nurse. As he left they squirted his hands again but he said he felt very reassured.

[Neonkittie17]

We need to keep up with regular blood tests or you don’t get your prescription filled and approved by the company who supply it if the rheumy nurses don’t receive your blood tests and let the healthcare companies know. I’ve got a few forms in advance for my RA re monitoring prior to my Rtx infusions and was told when to do them end of next month and a week prior to mid May so I’m in no panic at the moment. Drugs like Mtx need a three monthly blood test result from your rheumy department to keep them being supplied by Healthcare at Home and so does Rituximab and most of the RA meds do still, I believe. I usually go to my practice nurses to have my bloods done as quieter and quicker than hospital but sometimes if there are no GP nurse appointments for a couple of weeks, I go to hospital end of the day at 4pm before Phlebotomy closes at 4.30pm and get straight in as there’s no one there waiting.

[Pulfs]

I usually get my regular blood tests done at with GP nurse but now surgery closed only telephone appointments so will now go to the hospital for tests.

[nomoreheels]

If your GP Practice have closed to patients there will still be a skeleton staff working. Ask if a blood test form for monitoring can be supplied, you may have to inform them what is being tested. You can then take the form to the Path Lab at your local hospital. It may be busy but it’s not usually a long wait as there are usually plenty of Phlebotomists keeping a steady pace.

[Hidden]

I am also worried about this and I am due to have a blood test this week. I was put on Leflunomide at the beginning of February and told to have blood tests every two weeks for the first two months and then to drop back to having them every four weeks. However after having them for a month I had an infection requiring antibiotics and had to come off the Leflunomide and my methotrexate for two weeks.

I have now been back on it for three weeks. I don't know if having had a break I should have gone back to the start and need to have them every two weeks until I have been back on them for two months or whether I can count the first four weeks as part of the two months as well. It really is a problem to know what to do. I have to go to a very busy blood clinic where there are always lots of people and who knows what they are there to be tested for. I really don't know what to do.

I am also down to have a small op to remove my big toe nails at the end of May and also to see a spinal surgeon as my spine has just been discovered to be out of alignment and I also have several slipped discs and I have to see him in May. I now wonder if those appointments will still be taking place.

I sincerely hope I can still see the spinal surgeon because the pain in my back and down my legs is becoming more than I can bear and I can't straighten up or walk more than a few steps now. It is all a big problem to everyone, but for those of us who are already suffering from auto immune conditions it is very worrying.

[Livon]

I have to get a blood test too, I need to get it checked.

My wbc was very low last two blood test as to my platelets, liver count was up. Been off my ra med to see if that is what was causing it.

Need to see if it helped or if something else going on. Scarey!

Don’t even want to go in the hospital to get it down, but don’t know what else to do.

Hoping for no big flare🤞🏻

Best to all!