Hello! Who Are You?

Hello to all our members, new and not-so-new!

Every now and again I do this. I ask you to please please write something about yourself in the profile. We had 242 new members in August, and only 6 of them wrote anything about themselves in the profile! We have a lot of very knowledgeable and helpful people on the forum, but it's hard to give people proper advice and support if we don't know anything at all about you. So please do us a favour and click on your name or alias at the top of the screen, and then click on profile. We're all friends on here (at least we hope so), and there is nothing to fear from at least telling us things like where you live. when you were diagnosed, what you have (PMR, GCA, both) and a bit about your story. Thank you!

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Thanks for raising this again Kate.

As you say it makes our replies more pertinent if we know something about people. We don't need chapter and verse, but a little more info than "Hi, I'm so and so..." means we can tailor our replies to be more personal. Definitely countries help as there are differences in medication, protocols etc, and it would take the guesswork out of where contributors hail from.

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Well said, DL :-)

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Hear, Hear, Kate. :-)

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Updated!

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Thanks Marie!

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Ok, so far 4 of us have responded! Surely we can do wayyyyyyy better than that.

Come on folks, Kate is one of the original members of this forum, and she is asking for some help, lets get it together!!

Woo Hoo, Thanks Kate!

Jerri (aka purplecrow)

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Ok I added a bit more!

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Where are you from? Would guess US, but would be nice to know.

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You have helped me thru a great deal........hello from Canada

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Thanks

I do like to know where people come from.

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Thanks!

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Bless you!

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Done. Anything for Kate Gilbert! (Thank you so much for writing your book. Received it a few weeks ago and I couldn't put it down once I got it. So informative! Thank you!)

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You're a sweetie!

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Done .

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Updated last night 😉 thanks so much for writing the book Kate! It has been invaluable so far as has this group 😇😇😇

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I have my reasons for not being very vocal about my situation. Long story. :)

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It isn't your situation that really matters - but dose and length of time and country must be in it surely?

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Yes, and you have every right to keep your situation to yourself, but if you have a problem sometimes it's easier for us to have some idea whether you're male or female, roughly what age, working or retired and whether UK, US or wherever when we answer. As I said, different medication names occur in different countries.

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I understand, sometimes it takes a bit of courage to 'come out' but you are among friends here - you will still be anonymous. But no pressure.

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Thanks Kate. I think people communicate when they have challenge, otherwise posts may just be pointless. Pardon me what's PMR. GCA all the abbreviations get me troubled.

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If you have polymyalgia rheumatica or giant cell arteritis - I'd have though PMR and GCA were fairly obvious!

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JUst a thought stellfaye

The acronyms PMR / GCA etc might at first be a bit confusing for Newbies who are also non-native English speakers...? ;-/

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Kate, and Dorset Lady, I have tried but no matter how often I click on 'save changes' - it doesn't!

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Hi,

I did have problems some time ago. What I eventually did was delete the wording, save it all, then go in a re-input, save again. Okay.

I've just added a sentence now on my iPad - okay. Not got an Android, but don't see why it shouldn't work.

Sometimes the glitch is HU's end not yours. So just try again. Please!

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Sometimes it can be because you're doing it on a tablet and the HU server wants you to be doing it in Chrome or Edge.

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Thanks, both of you. I'm using an iPad mini, and have tried a couple more times with exactly the same result. I will give it a go again, next time I'm on the laptop

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I tried to do it twice last night but it didn't work. Is it possible that it can't be done on an Android device?

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Hi Gaijin, quite possibly. I recall this topic coming up here before...

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Thank you MB, I'm out of town right now, in London , so will try again on my PC at home when I get home.

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bless you, thanks

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Hi Gaijin,

See my reply to Mai45.

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Updated mine - sorry Kate!

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Country?

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Based in Montrose, Scotland.

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You know there is a Scottish charity? Based in Dundee.

pmrandgca.org.uk/

I lived in Arbroath many years ago and around Dundee a lot more recently...

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Please don't apologise! Thanks

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Just did it yesterday! 😃

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Greetings to all here ('Newbies' especially) :-)

Yep, I think it's important to know just the basics about a PMR / GCA forum member at least (i.e. Gender, Country, Age, When diagnosed, Whether PMR, GCA or both, Treatment type, etc).

I know that many ppl here like to keep their identity and personal details private - I can understand that there might be all sorts of good reasons for doing so.

That said, responding in a relevant and productive way can be a bit like feeling in the dark if people don't give some contextual info in their posts / questions (e.g. 'I'm struggling to reduce the Preds after / because..' etc).

We're usually a very kind and thoughtful Lot here - as I can testify from when I first joined!

And, don't forget, it's not all serious stuff - we have quite a lot of FUN here too ;-) :-D

MB :-)

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Hi All

I knew about the meeting on Thursday in Dundee - sadly was travelling back from a business trip at the time. Although officially an OAP, I still work as a food auditor travelling around UK, Ireland and Europe. So much for easing off!

A question for PMRpro - sadly need to have a tooth extracted later this year (well roots really as tooth is mostly gone - until recently capped with a crown). My dentist is aware that I am on pred - all being well, I should be down to 4 mg daily by date of extraction. Do you think I should take a prophylactic dose of say 8 mg that day? From what I have read I am below the threshold dose for potential adrenal insufficiency .

Not a frequent poster here, but I read the posts daily - literally breakfast reading.

Appreciate all the wise words and support that this group offers!

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I had a wisdom tooth removed about 2+ years ago. I was terrified with all the fuss they make in the UK. My dentist here (northern Italy) was totally dismissive (after I had contacted the dentist at the hospital who was mystified). No problems at all.

The most recent attitude is to monitor the patient during and after any procedure - so make sure someone knows you might possibly need a boost if you come over all funny. But really - it doesn't seem to be a problem, I haven't taken extra for anything. On the other hand - I doubt it would hurt.

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Hi! We are having one of our Research Roadshows in Scotland (Kirkcaldy) on 1st November, in partnership with the Scotland charity. Will you be able to come?

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Hi Kate

I would love to, but unfortunately working in Northern Ireland Mon - Thursday that week. I return on 2 November then going to a meeting on 3rd. It's all go for an old boy!

I downloaded and read your book - so much of it rings true and reminded me of the state I was in a year ago. All under control just now, but 5 mg Pred seems to be my sticking point just now. Back to 6 mg for a few days, then start DSNS taper back to 5mg.

Hopefully another time in Scotland!

Ian

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Looks interesting. How can I find out a bit more about this?

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I know this may be a bit late but Amazon seems Kate’s book. PMRGCA A survivors guide by Kate Gilbert

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Got it for Kindle. Once again recommendation from this forum 👌

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Hi Jamesain, I had a wisdom tooth removed a few weeks ago. I'm on 6 mg pred for pmr.

I was very anxious and the dentist gave me gas, which made everything just ducky!!!

Tooth was extracted, no pain, very little bleeding, no extra pred needed, and recovery was uneventful.

You should be fine...ask for the gas😜😂

Kind regards, Jerri

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Thanks Jerri!!

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Have updated as requested 🙂

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I can't seem to edit my original profile. It's good to read a little bit about people's lives and experiences.

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Hi,

See my answer to Mai45 about halfway down page. That might help. I

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Thanks - I will suck it and see!! (Probably quite apt under circumstances!)

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Done!

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I have posted my profile. This is a great group and I applicate all your wise input.

Enan

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Suitably chastised and added a bit to my profile. Thanks cc 🤗

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Hello Kate .. l have at long last updated my profile . I've really had the Blues lately and reading the posts on here make me realise that l am not alone. I hope that members on this Forum continue to get relief from the Support on this Wonderful Forum . Best Wishes trish29

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Done. I don't post often, but this forum has been incredibly helpful, first with PMR in 2011 at age 52 and now this past May with GCA. Guess I'm in it for the long haul! I am a nurse of 35 years working in the States in patient safety. Can be ironic at times! Thank you all for your wise and kind advice.

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Hi Kate

Profile updated. I did try when I joined the site but initially couldn't get it to save. The information and advice received has been much appreciated.

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I tried multiple times (from iPad and computer) to update profile, but was unable. Filled in all the boxes, "submit" box, (or whatever it was called) does not respond. Anyone else having this problem, or suggestions?

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Never mind! Just tried again and it worked. Happy to share.

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I had lots of trouble too on my android tablet, had to make about 12 attempts to fill out the form to join up. Ahh well I am here now. 😥

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As requested I updated my profile

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Ok I just added to my bio and profile as well / it's not overly interesting but nonetheless less a bit more info. Happy Sunday to all you beautiful people!! 😍

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Thank you - your profile is brilliant! I'm a Kathryn too by the way (after Kathryn Greason).

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Well Thank you Kathryn :) ....I just found your book and purchased it! I can't wait to receive it . I had to do some research to find it at a good price - as Amazon.com in the U.S was selling it for $126 US !!!! I'm sure it's worth every penny though . Thank you for enlightening all of us with your advice, support and knowledge!! This site is a god send .... Happy Day to you!!

Kathryn

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PMR now for 20months and down to 7mgms of Prednisone OD.walked 11 miles today,with friends find it very helpful to keep active.Reducing the Preds very slowly though don't want a flare up.

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Well, that took me about 6 tries but finally (glass of wine helped) uploaded..

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Thanks for posting on your profile - it's so interesting.

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I finally was able to post a profile picture but I keep losing the tex when I hit " save changes" ....will keep trying , though

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I did it! Finally,! Must have been the pred brain 😂😂

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Done it x

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Hi,

Very glad to have found this site. I am in Australia, female and 55.

I was admitted to hospital about 18 months ago for over 2 weeks with a severe one sided headache, noise and light sensitivity. After lots of tests scans, mri, blood and whatever else I was released with an undiagnosed headache. While I was in hospital nothing was helping the pain. The pain was so bad I could not sleep. Finally I had a 2-3 day Ketamine infusion and this actually worked and I was released.

Over the next 18 months I gradually became sicker and sicker. My GP ran a lot of tests and sent me to a lot of specialists. I got 1 diagnosis which is a small mass in my pancreas, this is just being kept under surveillance.

I suffer from sero-negative inflammatory arthritis which I take Imuran (azathioprene)

Up until January this year I was also on Jurnista ( slow release hydromorphone ) 24mgs and 6 Endone a day for pain.

During my time in hospital 18 months ago we discussed the fact that with me being on high dose pain medication that it was hard to give me adequate pain relief. January this year I started reducing all pain medications , it has been a tough ride.

I am extremely proud of myself though because up until about 2 months ago my Jurnista was down to 4mg a day nd endone to 2 tablets a few times a week.

What led to Temporal arteritis diagnosis.

Symptoms --- utter exhaustion, I could easily sleep 18 hours a day.

--- no physical energy, to cook dinner was a major challenge

--- drenching night sweats

--- waking at around 3am with a headache

--- waking feeling like I had a bruise on my head like I had banged it on

something during the night.

--- after a few weeks of waking with headaches, all over severe scalp

--- blurry vision

--- weight loss, no appetite

Next --- To cut a long story short, I was diagnosed with Temporal Arteritis about 7 weeks ago. I was put on 50mg Pred 5 days before a positve biopsy on my right temporal artery was positive for possibly treated Temporal Arteritis Remember I was on the Imuran which is an immune suppressant. ( I don't have the exact wording of the biopsy in front of me as we are away visiting our grandchildren

The prednisone has been like a miracle after 2-3 days scalp was a lot better, head was a lot better, energy was great, mood was great and I finally felt like eating. My eyes can still be blurry at times but after having them checked I have not lost any sight the blurriness is the prednisone.

So 7 weeks ago admitted to hospital by ambulance, 2 weeks later released. Saw a specialist Neurologist. His plan is starting tomorrow to wean the pred to 45mg going down 5mg I think it is every 2 weeks. I forgot to say my ESR and CRP are normal but they always have been even with the inflammatory arthritis, so the specialist said we will have to go on symptoms.

After a few weeks on the 50mgs pred my headaches started worsening again. Just over a week ago I increased the prednisone to 75mg for 3 days. After 2 days headaches were much better. 4 days after going back on to the 50mgs of pred my headaches are terrible pretty much constant. I am supposed to reduce to 45mgs of pred tomorrow.

The doctors where I live do not know a lot about TA and remember I am away at the moment. I will arrange to see a GP tomorrow remember we are away from home. I have no idea what they will say but I know in my own body the prednisone needs to go up not down. Any help or advice would be greatly appreciated. Thanks

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Sounds like you have been having a really awful time. How are you getting on now?

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Updated, best wishes to all.

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Hello, I have just joined. Will do my profile as soon as I locate it. I am 60, female and live in the country in Australia. Have had fibromyalgia for 11 years and live a great life until a year ago with sudden onset PMR and probable GCA. No net at home...have to go to library so cannot quickly reply. Will write more later. Not good today. Kind regards, K

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Hope today finds you feeling better!

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HI. I'm Bonnie West. Living in St Paul, Minnesota with my husband. I exercised a LOT.. did a triathlon last summer and hope to get back to it. My daughter lives in Sweden with her Swedish husband and two boys so we visit as often as possible and my son lives in Alaska with his very pregnant wife! (my children have gone as far away from mommy and daddy as possible!! haha!) I have a book which was published not in the US but in England ..short stories called Boyfriends.. and that took about 30 years. to write. I cannot tell you how grateful I am for this site. I am reading reading reading everything here that I can. I was just diagnosed 2 weeks ago. So I am totally ignorant. But already I think you all know more than my doctors!!

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Hello ..I am Teresa from Northern Ireland, approaching 70yrs old. Diagnosed PMR 4 weeks ago by my GP.. on 15mg Prednisolone and now reducing to 12.5mg. Due to have blood work in 3 weeks. I have become my Grandmother overnight! ... with stiffness and back pain! I now realise what my dear Grandmother suffered and indeed my lovely Mother too who suffered all her life from Rheumatic pain.. this awful PMR has to be genetic related. I know I shouldn't take Ibuprofen but one a day does take the edge off .I am so pleased to find your page.. reassuring that I am not on my own with this condition. I have purchased Kate Gilbert book which was a great starter for me in trying to understand what my body is doing to me..thank you Kate. Thank you all for being there. Onwards and upwards! x

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You know there is a Northern Ireland group? First on the list!

pmrgca.co.uk/groups/

If you have been on 15mg of pred for 4 weeks and STILL have pain - either you need to go up to 20mg because 15mg isn't enough (definitely NOT reduce) or you don't have PMR. You shouldn't need ibuprofen to "take the edge off", the pred does that but only if they start you on enough.

The 2015 Recommendations for the management of PMR say "the lowest effective dose in the range 12.5-25mg".

See Recommendation 3 - and show it your GP if he is unwilling to raise the dose.

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Thank ou PMR pro.. .. will contact m GP on Monday.. .

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My name is Bill Long, and I live in the United States in Central California. I was diagnosed in 2013 with GCA/PMR. I started at 60mg of Prednisone and 4 years later was give Methotrexate. Was also on Humira for 1 year, did not work. Then put on Orencia, did not work. Now on my second shot of Actemra. I have been down to 12 ml of Prednisone but due to relapses and vision loss at times I'm back up to 40 ml of Prednisone. I have blurred vision in one eye. Comes and goes, I have also extremely bad head pressure at times. The Eye Dr. gives me Timolol Maleate for eye pressure. I take 1 80mg of aspirin daily. I find when my head is under a lot of pressure, I use oxygen, which seems to help me. I use a marijuana cream on my knee joints with a copper knee brace. Unfortunately, I have to periodically use a walker or wheelchair. The only drawback I have is that my doctors are from a Veterans Hospital, which is also a training hospital for up and coming Physicians. Because my heritage is European and Swedish , The disease is not common and the doctors are not exposed to current treatments for this disease. Although we are finally getting there. I have done extensive research, read every article and book I could find. If anybody has any information on pain medication that is not habit forming , please let me know. I have been reading your posts but I am not computer experienced. My wife is writing this for me. I am 71 years old, a disabled Veteran from the Vietnam era. I would like very much to hear from anybody who can add possible lists of medication to help with joint pain and head pressure. I currently take Folic Acid and had a bone density test done, that came out ok. But was unable to get current MRI of my head or heart and stomach. This disease has limited my capabilities mentally and physically. Looking forward to either a cure or at least a decline in symptoms.

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"The disease is not common..."

PMR is the most common cause of rheumatic pain in over 65s and GCA is the most common form of vasculitis. Rheumatologists and ophthalmologists must have met it during training - but there perhaps is not a lot to teach about current treatments since the only medication until about 6 months ago was corticosteroids. Actemra has only been approved for GCA for about that long although by now there isn't a lot of excuse for not knowing about it.

However - your doctors seem a trifle off-piste since if they decided it is PMR/GCA there was no point trying Humir or Orencia and that has been in the guidelines for at least 7 years. At least they have finally got to Actemra.

Do your doctors think your pain is PMR-related? If so it is unlikely any pain medication will make any difference. Pred is the pain-killer for PMR. I imagine that the Actemra will fulfil the same role so be patient.

You would perhaps be better putting this post up as a new thread - when you put something in the middle of an existing one less people see it.

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Hey, I just joined last nite. Please don't give up. My head vise screws right now have tightened quite a bit. Waiting for the the pointy stake to go through the top of my head. Number 1: DON'T WATCH THE NEWS DURING PAINFUL PERIODS. I'm of European descent, Germanic ,Scottish (actually another story as my great grandfather was Andrew Carnegie's Piper) and English. Yale New Haven Hospital performed some studies on my family's genetics in reference to AVM/CM a couple of years ago.....tmi...blonde, blue-eyed. Physicians are sooo uninformed. I actually found prednisolone eye drops yesterday left over from my eye surgery last year and thought, what the heck, one drop in each eye of 1% prednisolone. Wow, such relief. Not complete relief, but substantial. This new year, I am hopeful for some relief! I'm not giving up. I AM GOING TO GET BETTER AND I am going back to work. DON'T GIVE UP! Help is on the way! Standing by you. The very best addictive medicine is uproarious laughter! And sex!

Best love and wishes, Cindy

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Female, 59 yrs, USA, non-smoking, normal to low BP. Normal to low HR. non-diabetic. Hypothyroid, levothyroxine (75 mg 1.5/day) Possible Hyperthyroidism (high blood Ca spike summer 2017. high Calcium for years....seeing new endocrinologist with new insurance. I actually bought my insurance based on whether or not she was on the ins. Provider's list. High CRP. Sed rate vial coagulated, no data. (Note: talk about proper procedures for blood drawing, urine collection, etc. )

Spring 2014: erythema nodosum. Biopsy confirmed diagnosis. Prednisone

Summer 2014: Anaphylaxis. Treated at Urgent Care/ prednisone, Epi-Pen script.

Autumn: open joint surgery resulting in life after death. ICU

2015: HUGE Event. My husband died. Not expected. Lifelong Partner! 56 yrs young!

Spring 2016: Anaphylaxis . Treated at Urgent Care. (Known allergen! Sap from my Mango tree! Yeah! A known entity).

Autumn 2016: Awoke in blindness. White blindness. Vision restored 12-18 hrs later.

TMI maybe

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Have you put this on your PROFILE page? Then anyone can check it if they want to know something in relation to something you post. Here it will be read once by some people and lost again...

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Hi Kate,

I will update my profile and add my story tomorrow - you might find my case interesting as it is unusual - the words used by the eye doctors / Rheumatologists - I don't seem to follow the flow(s) with my case.

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