It was back on May 18 when my doctor agreed to tapering UK style and he sent a script for 2 mg methylprednisolone. I won’t go into every detail...maybe I previously have...but can you believe this? The pharmacy called and said they are on backorder until July. I wanted to go down only by one mg ....I’m just not in a frame of mind to deal with this diplomatically or logically. My rheumy is not in on Fridays anyway. I think I’ll be checking on how to get meds from Canada!!
I may be reaching out next week to Dorset Lady and PMRPro....to help me work with what I’ve got. Maybe they have some cutting tricks where the tabs don’t crumble.
Have a wonderful weekend all...take in nature and look at all that is beautiful.
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Grammy80
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Home safe and sound....and HOT~! A walk in the rain sounds fantastic~!!
My cutter is super sharp also...but the pills just seem to crumble...I'm trying to cut a 4mg down to a 1mg. It is so inaccurate...I'm going to call the pharmacy that services the hospital on Monday...have a wonderful weekend. It sounds weird...but I hope it rains so you can go out again..xo
Good for you! I read your original post before it was edited.
It was actually pertinent in my opinion to your post as you were going to try to ask about medications?
You never know when you might be singled out by a reporter and asked , “ as a person in the vulnerable age Bracket, Mrs. Parker, what are your concerns for our President?”
As he was visiting a pharmaceutical manufacturing plant, the question might have gone forward!
It is more relevant and a heck of a lot more appropriate to issues at hand than , “ He’s a hunk and a half!” ( although that is uplifting and a feel good moment) but your question would put a spot light on larger, world wide concerns regarding medication availability and possible shortages.
Certainly this forum is not a place to discuss politics, and by no means will I do that, but if the availability of medications is an issue, then it’s good to be aware of that and let other forum members know so we can make plans ahead of time with out physicians, or ask or pharmacists if they are seeing this issue in the area where we live.
He would certainly be wise to say he would need to have those questions deferred to a senior advisor like Brix - to get back to her, and others. This is not the only medication, and I can tell you likely why it’s on back order.
We in “ my world” of auto immune cytokine clotting APS are keeping a particular watchful eye on the clotting component of Covid 19
There is a world wide heparin shortage right now also.
For some time micro clotting has been observed as the reason the lungs do so poorly. Then it was observed the clotting actually in some ( not all) could also involve other organs like the kidneys, heart, and brain.
It’s acting quite a lot like APS-( Antiphospholipid syndrome) but to be very clear it’s is not APS.
It is similar in the the Covid 19 virus , in so far as it’s understood at this point,it infects the epithelial layer of cell membranes, the vessel linings. The vessel linings of lungs, kidney, GI system, brain, or other organs.
The lungs seem particularly vulnerable with Covid 19.
Steroids stop the swelling (In the vessels) which causes The clotting. This helps the lungs recover. It’s one of the Meds used.
The steroids help the vascular swelling throughout the vascular system of the body- and the subsequent clotting. (This is why I’m on steroids.)
Of course anti virals, more specific treatments are aggressively being investigated and trialed. Remdesivir for now is the Best bandaid while monoclonal antibody therapy is looked to for even better outcomes - hopefully in place by end 2020 or early 2021. ( I would have to search to find my sources - but they are embedded in NYTimes or Washing Post AI Believe. Written within the week. )
If anyone is interested in Clotting aspects of this, you can look of info fro Professor Beverly Hunt, OBE. Consultant Hematologist Guys and St. Thomas / London
Twitter: bhwords
She is working very closely with all doctors in the UK with the Covid 19 pandemic.
She is the leading face for Thrombosis UK and has been for some years. ( Therefore She is very much involved in stroke advocacy.)
She is very quick to point out that this is a quickly changing playing field, and what she says now, may not be what she says three months from now.
This inflammation drives the clotting. Patients are switched to oral thinners and oral pred when discharged from hospital. I suspect we will see more of this in future as the clotting becomes a better understood component.
I will add a link to a short brief interview with here :
Personally I would think so. The more custom tailored question is what specific anticoagulation is the patient without Covid 19 on?
I’ll explain.
Currently I do not have Covid 19, and I am on warfarin.
As you know, warfarin is notorious for being a very tricky medicine- every other medication on Gods green earth interacts with it. This causes ( for the benefit of others reading) the thinness or thickness of the blood ( measured in terms called an INR) to swing in either direction very rapidly, and dangerously- posing great risk of clotting or bleeding.
Antibiotics and steroids are particularly bad about swinging the blood out of range.
Patients in hospital with Covid are generally placed now on Heparin to avoid this. I’m not sure if they are placed on IV bolus or LMWH like Clexane ( enoxaparin.)
If patients develop ITP, they should be switched to Fondaparinux, a synthetic LMWH.
I would be switched to Fondaparinux straight away. I clot through LMWH, and Fondaparinux is used in refractory APS, and is particularly beneficial with neurological symptoms, according to Professor Hunt.
I’m a patient at London Bridge Lupus Center, and my Rheumatoligist was Prof Graham Hughes ( Hughes Syndrome/ APS) along with Prof Natasha Jordan. I was very lucky to have them Both.
Dr Jordan told me that Prof Hunt recommended Fondaparinux in place of LMWH ( Low Molecular Weight Heparin) in some instances.
I think most patients with no history of clotting disorders could be on Xeralto or Rivaroxaban for a very short time following Covid 19 hospitalization. They would not need a higher intensity blood thinner . But I suspect the vascular system might still need calming with steroid therapy. I have no idea how long it takes to calm down those vessels ( even tiny capillaries) after such a viral attack.
Data is already in I’m sure- and it must depend on many many factors.
His INR is being difficult on warfarin but he won't accept any of the NOACs, rivaroxaban nearly killed him and 18 months on we are only just getting out of that.
Very difficult situation and I am in the same shoes.
( I assume for different reasons.)
There are two APS specialty hematologists in London. They are equally excellent.
My consultant Hematologist who is also an APS specialist is Prof Hannah Cohen - UCLH. She sees patients privately at the McMillan cancer center. My understanding is she is cutting back her hours and only sees APS patients now.
I’m wondering if the next time you are in London, if you might make an appointment ahead of time with either hospital. It’s difficult to get in with Prof Hunt I’m told, but Prof Karen Breen (e) ? is also in that Dept - the thrombosis unit at St Tommy’s.
Maybe during the lull in the storm he might be evaluated? It could be worth seeing what other options might be available to him so he would not have to have such a labile INR, or have a need to be exposed to hospitals for VP ( vein ) draws.
Does he have a coagucheck xs finger prick machine?
If he does not have APS, they should be fairly reliable.
This does confirm my feeling that we, as antiphospholipid syndrome patients who are already on warfarin would be better protected than not against clots shoywe develop Covid 19.
I include this for your husband.
( GHIC is our charity - Graham Hughes International Charity.)
It’s similar- but this is more of a “ lupus Vasculitis” or APS Vasculitis we can get.
we are ANCA and PANCA negative most often, yet the Antibodies directed against the phospholipids - which make up the membranes of the cells of all vessel walls are attacked, they can swell, sometimes shut- causing blood to back up, stop all together, and clotting / and Vasculitis.
An additional problem patients with APS have is we also have antibodies that attack proteins in our actual blood, making the blood , “Sticky”. The antibodies themselves are shaped like the capital letter Y so they get hung up on cells, etc and easily cause traffic jams, or blood clots.
But for the most part , yes. Covid is a sticky blood scenario in that it’s inflaming the vessel walls and setting them up for clotting. ( almost like a Vasculitis. ) There have been reports of DVT, “Covid Toes” which is small vessel clotting) ...
The point being- steroids do help calm down some of the swelling of these vessels.
Do you have such things as compounding chemists? Here in Italy many pharmacies will make up tailored doses by grinding tablets and dispensing them into capsules - small charge for it but it was worth it for OH he decided.
You could also ask if there is a liquid oral version.
Here in UK I was able to buy a pill cutter from my ASDA pharmacy. They are owned by Wallmart, so maybe you could get one. Very inexpensive and very effective.
Thanks for sharing that...I have a really sharp one from the hospital but cutting the tab in half twice...it crumbles. No way I could found on it being 1 mg. I'm going to call compounding chemist as PMRPro suggested...I get pill packs and I know they do compounding. I'm really interested in tapering...but without any flare is what I'm trying to achieve. xo
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Frustrated
Rummy first visit yesterday confused & frustrated 
My thumb popped out? :)
Is this a flare up ? 
What should the PMR pain/stiffness goal be while tapering prednisone?
