Bruising, cuts that don't heal

Thanks, Cincy, I/'ll check into this product.

You are lucky there!  aybe you are a lot younger than I am!

What do they use instead of tape?  They always want to slap it on real fast and then say it will be OK!

I usually just put some cotton wool on it and check it is not bleeding before I leave. Mind you I have poured blood all over the carpet at the surgery one time! I looked as if I had been stabbed. 

Thanks for your reply.  I use teflon (non-stick bandage) then try to wrap it with Kling (roll gauze) if I can, or use very little tape to keep the bandage on.  This non-healing now infected area on my leg was caused by taking tape off of another "injury."  So am now on antibiotic twice daily, and they cause side effects too.  Ugh!!!

Yes, as annoying and problemsome as the skin issues are, I am also so happy for the prednisone so I can function and have a life.

By the way, these medical people always want to slap on the tape before you can say Jack Robinson.  So what  can they use instead of tape?

I live in Florida and after I have blood drawn they first use a small gauze pad and then a tape that sticks to itself but not to the skin.

I have tried everything I can think of to stop the ugly blotches and sometimes little skin tears but nothing works. Before my last flare I was down to 10 mg. and noticed the problem had lessened. I have it mostly on my arms and hands or any skin near a bond. I wear 3/4 sleeved and cover the ones on my hands with a makeup cover up. Not perfect but a bit better.

You guys ever try paper tape?   It comes off easier than the

fabric or plastic stuff.    I'm 79 so have the brusing problems

and if I just bang hand off comes some skin.  Pretty depresssing

to have to deal with this all the time.  I guess some of it is due

to pred but also happens in the wonderful aging process also.

In my case any tape is a no no. I suppose I could use crepe bandages, but that may be a bit of an overkill when having blood tests! 

It is a very common problem forsome  people on pred - it's the acceleration of aging effect pred may have on tissues.

As long as you make sure it isn't bleeding there is no real need for the tape - you'll just have to sit a bit longer!

I don't have quite the same problem - mine is that either alcohol wipes or tape is fine, both together is absolutely not. My ladies here don't use alcohol for me (and that really isn't a problem) and are perfectly happy to wait until I stop bleeding (and I'm on warfarin!). They are horrified at the state my arm CAN  get into so never argue.

There are special dressings you can get for bigger lesions but they won't have them in the phlebotomy clinic. If you do have a dressing don't EVER rip it off, soak it carefully to get it to just lift it off.

ptolemy - I wouldn't take it as OTT to use a bandage over a phlebotomy "wound" if it stops the surrounding skin being damaged. But then, I have done the vampire job and there is nothing mroe infuriating than preserving a patient's precious vein all week and coming back in on Monday to find the medics over the weekend had messed it all up...

Would oil help to lift tape by degrading the adhesive?

It might - I don't know. But soaking it would - like people used to do for the children to get a plaster off a knee or wherever.

I put "we" first - my children rarely had a plaster, I never had any! Bad mummy......

My father, a doctor, always discouraged us from covering up cuts, he reckoned that the air helped the healing process. It could be rubbish of course or he did not have any plasters in the cupboard! 

My cuts will ooze blood several days or more oftentimes, so try to keep them covered so they don't drip.  Problem is mainliy on my lower legs and forearms.

He was right about getting the air to a cut - but that was also my excuse...

I had two carotid artery surgeries a few years ago and they

sent me out of the hospital with about 8 staples down the

side of my neck with no bandage on either time.   Guess that

leaving wounds open to the air is the current medical thinking.

I think any wound seals within about 8 hours ( think that is what

I read) and after that no bacteria could get into it....

Wow!  Several days???  do you apply any pressure?

Are you on any blood thinners?   Guess that would make

a difference but would try putting pressure on those

spots.

Hi Audriey,  I'm a Floridian also on the Gulf Coast, Sarasota and Bradenton.  Where in Fl do you live?

i'm Faye.....I'm on the east coast of FL.....Titusville, just

across the Indian River from the Kennedy Space Center.

Sort of small world huh?

Hi Faye

I'm in Longwood, right above Orlanfo. I think we r 45 minutes away from one another Do u use a doctor in Orlando? I'm always looking for a good rheumatologist who understands our condition. Been looking for a year and so far nothing.

Email me. There's a way to do it but I'm not sure and we also have a yahoo PMR group here in the USA. it's small and doesn't get a lot of response https://groups.yahoo.com/neo/groups/pmrusa/info

We need an Eileen. 😄

Audrey

Emis Moderator comment: I have edited the link to the actual site page rather than the email contact.

My reply to my fellow Floridian neighbors has been sent to a moderator for giving our USA website. That's ok someone from Patient will get it to you if u are not already there

I am in Longwood right between both of you.

We should meet here in the middle. It would be great to meet someone else with PMR person to person.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

About a third of the way down there is a link for the US site - is that still the right one Audrey? If not - please notify the moderator so he can change it.

This link will always go through - it's internal...

Sounds like you have enough to get at least a 6-monthly meeting going in Florida!

In case you didn't see - is that link still the right one?

Hi Eileen!

Yes, that is the correct link.  Thank you.

I have been contacted by the USA group.....thanks for

the info....

I'm in The Villages, just below Ocala. There are several more people on this site that are in Florida.

I haven't found a good rheumatologist. I don't think they exist. They tend to want you off Pred regardless of how you feel. "Drop 1 mg per month till you're off the Pred." Still think PMR goes away in two years. Not keeping up with latest news.  I wish they would read this patient forum. They need to hear us.

Someone on another forum put up a link for some work by an ophthalmologist the other day - he has a few bits I disagree with because he is insistent it only happens in over 50+s and that ESR and CRP are all you need to monitor treatment (so hard luck if you are 50 and have a normal range ESR/CRP). But he does recognise the existence of what he calls occult GCA - no other symptoms except the visual ones. And he also believes that higher doses and for longer, even for life, are the way to go. He also says that about 4 years is the median time to be down to the lowest dose that maintains ESR/CRP stable, whether there was visual loss or not. Note that that is to find the lowest dose - NOT to be off pred. Very different from most rheumies.

Google Hayreh GCA 27-year study and you can read the abstract I haven't got the link to the full paper here and can't post it anyway but it doesn't really say much more than the abstract.

I have to say - I don't think either PMR or GCA should be in the hands of rheumies entirely. I see the logic of PMR being in rheumatology even though it is a vasculitis but not GCA - even though they are so closely linked. However - I know it doesn't help you guys but there are good rheumies, 2 superb ones in the UK. I keep saying one of them in particular should be cloned!

I am not that far from you, in Longwood past Mt. Dora, about an hour from you as well as Faye and the lady in the Sarasota area.  Would be great if we could come together for quarterly meetings.

i gave up two rheumatologists and now my GP with my guidance 😃😃oversees my PMR.  She is a doctor from the old school and will spend a half hour with a patient if necessary.  

Received the Bag Balm and just started using it so it will take me a week or two to see a bit of a result  Just yesterday I disposed of a years worth of half filled bottles of lotions and jars of creams that didn't work.

i do want to mention two things that have helped me considerably.  

The first is a powered drink that contains 38 fruits and veggies.  It definitely gives both myself and my son (sarcodosis) a great deal of energy.  It's a bit pricey $50.00 for a months supply but well worth it.  I had stopped it for a week and really felt the difference.  

The second idea -- the squatty potty.  If you don't have them where you are located you can use a stool or whatever works.  Instead of me going into detail just google it.  Before using it I had considerable pain coming from my lower back muscles.  It has improved considerably.

Good morning, Judy, from a Judy in MI. I don't know if this will help, but here goes. I have a Rheumy like you speak of. I have finally helped her a bit, as I had a serious talk. From what I have read here in the US, they put us in a CLASS. THIS IS WHAT I SAY, THIS IS WHAT YOU DO!  We are not all the same. I am 'a weird one' as she now calls me!  LOL. I had got so much info from this site, at first she wouldn't listen...now, she does, and we work together. She also has had 2 young Drs. In the office, consulting and they are WONDERFUL!  I have been impressed, and talked with both about the issue. They both said that they are now trained to TREAT THE PATIENT, NOT THE LAB REPORTS. LISTEN TO YOUR PATIENT. THEY LIVE IN THST BODY!   AMEN!  Perhaps you can relate to one you have seen? And have a little discussion ?  I wish you luck, this is one H--l of a journey,  sharing helps know we are not alone!  😃 Judy in MI

Hi Judy in MI, I have an appointment this morning. I already had both barrels locked and loaded (in my mind) ready for a battle, but perhaps I should try the gentle approach. My rheumy is like you said" This is what I say, this is what you do!" I should be reducing 1 mg per month regardless of how I feel. "Just tought it out" she said. Her young associate is learning from her and I hate to see that bullheaded approach to PMR.  I'm afraid it doesn't work.

Wish me luck,

Judy in FL

I'm not sure about driving to Orlando.  Or at least my husband

doesn't like getting into all that traffic.  He is turning 80 next

month and gets nervous in heavy traffic now....anyhow let

me know when and where and I'll see how I'm doing health

wise and if I can make it.  One more cataract to go.  Biopsy

on arm turned out to be squamous so need more work done

on that.....heading to Physical Therapy for shoulder problem

Where the hell are the Golden years I heard about?????

My Bag Balm arrived yesterday too.   I'll also post the results

It is a little greasier than I had hoped but eventually

disappeared into skin....Not sure what a squatty potty is but

when we redid the bathroom from garden tub to walk in

shower my smart hubby had plumber put in a "big boy"

I think that's the name.  Anyhow a toilet that is a few inches

higher and boy is that a blessing.....when I go in  a stall in

a restaurant or movie I have an awful time getting up.  They

have any  grab bars to help....

She obviously doesn't understand how it works does she? And she doesn't get the difference between "steroid withdrawal rheumatism" and a flare then? You can't tough a flare out, it will just get worse - you can tough the withdrawal out because it does get better with time. But there is no need to if you go slower.

Off the point here a little,  Eileen, don't remember but I posted

about printing the Symposium papers (can't remember the name)

and taking to my doctor.  I had an appt this a.m. and took them

in and he was very receptive to reading it.   Your health system

is very different but the info on PMR and GCA could be

helpful to him   I"m so lucky.  He really is a JEWEL!  A doctor

that isn't positive that he already knows everything there is to

know.

Wishing you the very best. I am thinking with my first encounters, she thought I I was doubting her TRAINING ? ? LOL

Use the "disabled" or "accessible" cubicle when available - that should have a grab bar.

PMR and GCA  are the same wherever they crop up. I'm off to a conference at the end of next week which is rheumatologists and others from all over the world and the meeting is a movable feast - 4 years ago Borneo, then Budapest, this year Whistler. I'm really looking forward to it. 

And the purpose of the meeting? To develop sets of criteria that will be used all over the world for research into various rheuamtic diseases, including PMR which is why I'll be there. This will mean that research can be compared or pooled - to give bigger studies with more power and meaning in the results. So there will be opinions from USA and European and Pacific Rim residents - can't get more international than that can you?

Hi Faye,

i sent you an email as I had address from USA site. 

I am using the Bag Balm but it's too soon to tell.

i hope it works.  If not Ill try what is called "holy oil"  which is supposed to heal everything -sent to me through the mail for a donation.  I know it sounds crazy but you get to the point where you are crazy and tempted to try anything-- but no donation until I see results😃😃. I've read where people have willed themselves well  or at least they think they have.  

Yes , PMR and GCA are the same where ever they crop up

but we all know from listening to the different treatment some

of us get that not all doctors have the same ideas on treating

this awful disease.  So......if my doc can get some different

takes on treatment that can only be good right?

Yeah,  I have a counter full of assorted products that will help

assorted problems.....Usually they don't but I keep trying.

Sorry...didn't finish my thoughts.  I hope you learns lots of

new info and bring us back some fresh insights.  I really don't

think there is as much interest in PMR-GCA in the U.S. as

other countries.   I found that out when I tried researching it.

I'm not overly computer smart but couldn't find much of anything.

Eileen,  have a great trip with more than a few gastronomic and vine-type inculgences . . . . . .. . .!  And, take care of yourself.     T

  

Great idea. Wish we were closer. Elinor, Sarasota

I have a 'lovely' rheumatologist - but he is insisting that I can get off pred by the end of this year (my two year anniversary of diagnosis). 

I just laugh at him. lol

"just tough it out" !!!!!!

WTF??? (sorry if this offends anyone! lol)

I hope you've read her the riot act this morning and she's learnt a thing or two from you!

 

I think it hits the nail on the head! You did of course mean What The Flip didn't you? 

Faye can you clone him? We really need a few in the US. They know everything there is to know.

of course I did.... not.

Saw my Rheumy yesterday.  I told her about the "dsns" method. (Whoosh!) that was the sound of my statement whizzing over her head. She replied, "As long as you drop 1 mg per month."  It can take you almost a month to get to that lower dose, and stablize with the new dose. Ugh!

mine did pretty much the same thing the first time I mentioned it, then when it all went pear shaped after reducing too quickly she suddenly thought it was a great idea! Thanks for listening the first time lady!