WiFi finally..

Hi all you wonderful people...

It took me two days to finally get my phone to let me have a hot spot to get WiFi. So today I feel wore out ... normally two half days at radio shack would be fun but not when my phone doesn’t work. ANYWAY!!

I have a new person my own FNP. She is very open to anything I share about Pmr n GCA. Her main concern is my melanoma skin cancer. It is a three hour trip to go see my new dermatologist and she froze my brain in place when she asked if I wanted a referral to an oncologist. I think I grinned at her but said something lame I am sure.

So, in the last three Months I was feeling pretty good so I went from 10 to 9 to 8 held for a week then crashed n burned I am back now to 15. Ok all, I am doing the slow method from now on no matter how I feel.

My only pain or I should say my main one is my left leg. At first I thought it was the stairs in my move that hurt my hip but it is more the top of my femur and at times the bones in my entire leg. I have a request by my fnp to try an exray. While I am sitting here the pain is right at top of my leg so don’t know if it is hip or bone.

Then my new friend told me about her dad who got melanoma and was gone within the year after some were removed. So now I get to wonder about that.

Ok so for the fun stuff. I took a picture of 9 deer in the snow in my backyard. My son said it was a calendar he is so envious of where I live. We have gotten two days at a time of snow then slush for a week then snow. The snow is slowing down which I found out our water supply depends on a good snow season. I was told we get snow well into February. I can’t believe how awesome I feel sitting and watching the snow. It is so beautiful.

I have been trying to keep up here by reading your notes at the library.

Enough for now....anyone have a bad hip out there?..

[CT-5012]

Lovely to hear that you are settling in your new home, deer in the snow sounds really great. No snow here in York yet maybe a little next week just hoping we don’t get as much as some parts of Europe this last week. Your health problems don’t sound so good, hope it improves soon meanwhile sit back and enjoy watching the snow falling. ❄️☃️

[SheffieldJane]

So great to hear from you in your winter wonderland, I pray that your Melanoma is dealt with successfully and permanently, my son in law removes them every week from his patients in Australia - it seems almost routine there. Sorry that you are troubled with leg pain, I hope they get to the bottom of that too.

I would love to see your picture of 9 deer in the snow, it sounds like heaven. Take care. X

[Hidden in reply to SheffieldJane]

I have it on my phone and I hate my phone because I can’t figure how to get pics off it. Maybe I could take a pic here off my phone n then try to figure it out. Any help is acceptable. As to melanoma I am thinking the doctors who removed them would have been more aggressive if it was nasty. So for now until I know different it is life as usual with Pmr. I just saw your pic of your children I assume otherwise you picked a good looking photo hehehe.

[Daisychain12 in reply to Hidden]

Didn’t you get pathology results Lin? You need to know how deep it was and if they got it all out. It’s highly curable when caught early xx.

[Hidden in reply to SheffieldJane]

It worked I used mu iPad n took pics but had to start new thread. It is right out my back window. The creek which I can also see is to the right. They came up out of creek.

[HeronNS]

Welcome back.

[Rose54]

Hi

Same story took 3 years to get down to 7 from 15 flare end of Nov then back to 15, stayed thier for a month now trying reduction of 1 a month .

Have pain in left hip and burning pain at top of hip .Both goes after resting or taking pain relief

have been like this about 2 months but appears to be improving .

I am certain mine is not PMR related.

Best wishes in your new home

Sounds amazing

[DorsetLady PMRGCAuk volunteer]

Hi

Glad to have you back. Please don’t worry too much about your melanoma- if caught early it’s little more than a simple operation.

As for your leg/hip - sounds very much like mine prior to my recent hip replacement (last week). So if X-ray does show if needs doing - then that’s the way to go. It will only get worse until it’s done. Please keep us informed on both fronts!

[PMRpro Ambassador]

Never mind the slow bit - just stop at 9mg! Then you won't end up back at 15mg. And remember, if 10mg was fine, you probably only need the 15mg until things look better and if it is only a couple of weeks you could go back to 10mg more quickly.

My SIL had melanoma, found in her mid-50s I think, but died of something totally unrelated in her late 60s, early 70s. Things have progressed a lot in the last few years.

[Hidden in reply to PMRpro]

Hi Pmrpro,

So are you saying I can drop from 15 to 10 now that everything has settled down? I was doing great at ten.

[PMRpro Ambassador in reply to Hidden]

If the flare was only because you tried to go to 9mg then yes, you can head back to 10 faster than a slow taper. If the flare is because there is more disease activity it might mean you need a bit more than 10mg.

[Hidden in reply to PMRpro]

At 10mgs I felt pretty good. I had been on it for about 3-4 weeks during and after my move. So thanks for the advice I shall try it.🧐

[linda49]

Good to have you back with us Linda. Your new surroundings sound idyllic.

All very healing I would think……

Sounds like your new health care team are proactive and taking good care of you when new and worryingly issues crop up.

Good luck in your new home and surroundings.

Linda

[Hidden in reply to linda49]

Hi Linda, I have been most fortunate to have a good health team on my side. For being a town of 1700 or so I was pleasantly surprised to see our fabulous hospital with a real ER and everything...

[Jackoh]

Your new home sounds wonderful. My mother had two melanomas when she was in her late 80s. These were both dealt with successfully and she is now 93 ! As folk have said when dealt with in the early stages the operation can be very successsful. All the very best and let us know how you get on. X

[Hidden in reply to Jackoh]

Thanks about the melanoma story..n Dorsetlady n Pmr etc... I think I was starting to freak out a bit. I will do that after my new dermatologist appt 4 of February.. it is a three hour trip thru the mountains and if it is snowing I will take the bus if not then I will drive. I have had two removed the one on my cheek was the worst. It had clean edges so that is good. The one on my shoulder was just minimal. My face still has not healed completely the incision cut a lot of nerves on my cheek and still hurts when touched. Ok I won’t touch it then. That was done mid July.

[Jackoh in reply to Hidden]

All the best x

[pmrgcavictim]

HIPS. Yes thanks, a matching pair, can't decide if it's hip or top of femur. But when walking (if that's what it can be called) the pins and needles flowing up from toes to knees, and the thigh muscle pains (front), and the foot numbness, plus hot under toes feeling, takes my mind off it a little. What next. Trevor.

[Hidden in reply to pmrgcavictim]

Here I was thinking bone cancer. See how silly can I get.

[piglette]

I had dreadful pain in my thigh when it was discovered I needed a new hip although no pain in the hip itself. I think it must vary from person to person. In my case it must have been referred pain.

[Hidden in reply to piglette]

Yeah I can’t seem to pin it down. It hurts sometimes when I sit but than the first stand up is always fun. Oh I then need to take a step. Ouch. I was supposed to get an exray but they haven’t called guess I shall call them.

[piglette in reply to Hidden]

My first step was always painful. I would chase for the X-ray. I had real trouble getting one initially.

[Hidden in reply to piglette]

Did you end up with hip surgery?

[piglette in reply to Hidden]

Yes I had my right hip replaced. I was told that the steroids had been eating away at my cartilidge.

[PMRCanada in reply to piglette]

My ortho surgeon compared x-rays of my knees, split screen, and the deterioration was noticeable. I know have to have and xray every 6 months until surgery. He also mentioned that having 6 months of unchecked inflammation in my knees (where the PMR symptoms first emerged), along with the Medrol (steriod) injection(s), contributed to the rapid deterioration of the cartilage resulting in bone-on-bone contact.

Now I wait for surgery, try to lose more weight, and do quad strengthening exercises. Wait time.....2 years!

[piglette in reply to PMRCanada]

2 years, OMG, I would have taken a one way ticket to Switzerland by then.

[Hidden in reply to piglette]

I always say I will go out looking for meteors in the hot Arizona desert. Switzerland is a bit far. Hehehe🤔

[Hidden in reply to PMRCanada]

The thing with my hip is so weird. One day I can hardly walk and the next it is so much better. Every once in awhile my legs buckle not at the same time but I would have fallen down if I hadn’t had a chair or counter near by. Today my right hip is hurting so go figure sure hope they are not going bad at the same time.🤪