Hi, I have been suffering with insomnia off and on this past year, so my stress level has been high. I recently (within the last few minutes months) discovered a slightly bulging vein in my left temple. I also had bloodwork don at the beginning of the month and my wbc and neutrophil count was high. The last few days I’ve felt tenderness around my left temple. I of course googled about what it could be and low and behold, I see there’s a link with GCA and PMR. My mom had both. Her niece has it too (she’s about 60 yrs old). I’m freaking, because I saw all hat my mom went through and how the meds ruined her body. I’ve also been experiencing pain in my right arm, wrist and hand, like a dull ache, and the bend in my wrist hurts when I’m on my hands and knees. I’ve had to quit yoga because I’m not able to go due to my right hand. I’d love some words of encouragement or thoughts. Thank you.
I’m in need of some encouragement.: Hi, I have been... - PMRGCAuk
I’m in need of some encouragement.
Hi there.
I'm not a medic, but I would say that you need to keep seeking a diagnosis, be persistent, take the meds that are prescribed, and ask about what supplements might help you ward off the worst of the side effects (they can be managed).
The worst thing you can do is "freak". That's not going to help anything, and it could actually make it all worse.
I know you're scared. It can be really hard to get through this. But once you have a correct diagnosis and a good treatment plan, you're going to start feeling a lot better. Try not to stress out. If you can't sleep, at least rest.
Hope to hear more from you after you've started the medical rounds. Make sure you mention the PMR/GCA in your family. There is some evidence of a genetic link with both conditions.
There's a lot of information and support to be found on this site.
I'm responding to you because I'm in New York, and lots of the experts on the site are currently asleep. But I wanted you to know that you have been heard.
Take care...
Thank you so much! I’m in the Toronto area. I’m a high anxiety person as it is, so I’m doing my best to relax. I can’t actually get in to see my family dr til next week. I’m not sure how urgent it is to get in to see him, or if I should go to the hospital.
If you start getting really intense headaches, or start having any symptoms at all involving your sight, don't hesitate to go to the emergency room. If it is GCA, you need treatment with prednisone to prevent permanent damage. I'm not telling this to scare you, please don't flip out, but better warned of danger than left without the info.
And if it is PMR/GCA, it can be treated and you can completely recover. It takes quite a while, but you can live a completely (well, almost) normal life during the course of your recovery and afterward.
I'm into my 3rd year with PMR, work full time as an executive in a financial institution, have reduced from 20mg pred to 6mg pred, kept my sanity and my husband (haha). I gained and lost a few pounds, got the "pred face" and "pred belly" and "pred hump" and lost them, too.
So many of us will tell you that sometimes it can be tough, but we do get better.
The experts will be along in a few hours.
Let us hear from you, whether you have questions or just need to vent.
Can you tell me if you had the artery biopsy?
No, sorry, I haven't had GCA.
I answered your post because I know what it's like to be in the dark (literally and figuratively) and scared, and I know that most of the members are in the UK, and so long since asleep, or should have been.
There usually is someone haunting at night. We may not have the answers, but we do care.
I had the biopsy. Talked to the person doing it all throughout. Only thing that hurt was getting one of the stitches that didn't dissolve out a week or so later. It did prove I had GCA. I am also in the Toronto area.
How risky is it?
I don't believe that it is risky at all.
Lovely of you GG xxx
I only have PMR so I’m afraid I can’t comment on GCA or a biopsy, but I’m also in southern Ontario (Tillsonburg), and wanted to send a message of support from a fellow Canadian.
Given your family history, I understand why you are anxious. As another member has mentioned, stress and freaking out is the worst thing for PMR/GCA, so do your best to stay calm until you’re able to see your Dr. If symptoms worsen (headache, scalp sensitivity, vision problems) do not hesitate going to the emergency dept. of your closest hospital.
There are some things we can control, and others we cannot. Others will be along who have much more knowledge about GCA and I will say this forum has been very informative and supportive.
If it does turn out that you have either or both of these conditions, try to remember that everyone is different and responds to medication/treatment differently. What happened with your mom may not be how your body deals with it.
Listen to your body, breathe, and try not to upset yourself too much. We are here to help, you are not alone
Leslie, age 56
Diagnosed with PMR May 1/18
Started on 20 mgs pred, currently at 9mg daily
Thank you! I have a genetic mutation from my mother that increases risk of clotting. My sister also has it. I have 3 sisters, I’m the youngest and they all have autoimmune diseases. I’ve had scalp pain for about 2 years. I see a dermatologist and nothing she has prescribed has helped with the scalp tenderness. I’ve been thin my whole life and since having my son 2.5 yrs ago, I am the skinniest I’ve been in years. I am a bit more relaxed after reading the forum comments here.
Hello. Yes, you need a diagnosis but you also need to try to manage stress if you can. My husband who doesn’t have GCA could be a poster boy for GCA with The Vein he’s got in his temple, so it’s not the cardinal sign of GCA. Raised BP, teeth grinding cause all sorts of head symptoms and stress postures can cause arm and neck pain so it can be difficult to see the wood for the trees.
If you do end up on Pred, so much can be done to stop the side effects and not get a ”ruined” body. Take control from the start and it’s much easier. Having strategies for dealing with stress is also really important, especially if you did end up on GCA doses. One step at a time...
You are obviously VERY young for GCA - in your 30s maybe?????? And that alone is going to make it very difficult for you to get anyone to take that seriously as a diagnosis. It is an extremely rare disorder anyway, in under 50s it is even more rare. Under 50 there is another form but it doesn't sound likely from what you say at present.
As has been said, lots of people will have raised blood vessels in their foreheads without it being GCA. A good start for you would be to see your GP and check whether this is a vein or an artery. GCA ONLY affects arteries so if this is the track of a vein - question answered. Discuss the pain in your right arm - there are other things that could cause that that could also lead to GCA-like symptoms elsewhere. Your pulses and BP should be checked in both arms. And your white count etc needs to be checked again and also ESR (sed rate) and CRP need to be checked. There may be something going on - but I don't think you can jump to the conclusion it is GCA yet.
Oh you poor thing. It’s horrible to be scared. Sending you massive hugs. I had the biopsy it was a piece of cake honestly. No dramas at all. No pain or any reaction. Xxxxx
I didn’t realize that most people on here are from the UK. My parents were Scottish. My mom had GCA and PMR
I can understand your anxiety is raised because of your family medical history.
You obviously felt alarm bells ring when the symptoms you were having and put in the search engine came up with GCA/ PMR.
But , you need to stay as calm as you can.
If you are below 50 , like myself , even with a family history of GCA , it can still be rare.
With the other aches and pains you mention there could be many different reasons for your pain not just PMR / GCA, and with investigation you could find that it could be something that may be rectified easily , or with milder drugs and some life style or exercise changes.
All sorts of things , even simple vitamin and mineral deficiencies , hormone changes , enzymes or mild fluctuations in thyroid or adrenal function can cause similar symptoms that are alarming but potentially treated quick quickly too.
Your family background of autoimmune illness does make it important for you to see a GP , explain all of your symptoms and get full blood profiles , especially for inflammatory markers ESR and CRP done , and possibly your ANA / RA factors.
If the issues in your right arm are causing stiffness and mobility issues a request for X-rays if they don't suggest them is important. They may suggest an Opthamologist first if headaches are affecting your sight but not classic GCA pain.
Your GP , if you are younger, may not consider a biopsy is the first thing to perform as GCA/ PMR isn't the first thought for diagnosis under 50 , but don't panic about that. They will know your GCA/ PMR concerns and will inform you to contact them if your headaches become worse , especially if your eyes or vision becomes affected. But they will rule out any other causes for you for your symptoms and treat you as soon as they can because of the clotting/ autoimmune issues in your family.
I do not know if you are able to speak with your Mother, or someone who supported her with her GCA/ PMR , not knowing your personal circumstances , but if so it may help you put your mind at rest . They will know from personal experience exactly where their pain began and how it felt , they will be able to help guide you through you tests if you end up needing them.
Whatever happens come back here to get help and support , but also tell a friend or family member you are closest too , and helps you , and ask for them to support you while you are dealing with this . You definitely need someone to help keep you from getting more anxious and keep you relaxed at the moment because stress , with any illness , can increase painful symptoms and it would be good to reduce it by being calm .
You have had great advice above , and if you do unfortunately get diagnosed with pMR/ GCA their are lots of people here that can give you great tips and advice to make it easier.
Take care and let us know how you get on , hugs , bee xx
Thank you. I think my anxiety has settled down now. I had all th necessary blood tests done yesterday. I am praying that I don’t have either. My mom is deceased. But she suffered many issues since her treatments started back in 1992. I really appreciate your advice.
All of my bloodwork came back. Nothing indicates in my bloodwork that I have anything rheumatological or inflammatory going on. I’m happy about it, but I’m still going to request an ultrasound of my left temporal artery/vein area. I appreciate all of the encouraging words from you all. This is a great community.
Sorry , what are you requesting I think autocorrect changed what you were writing. Thanks xx
Thank you. Mi edited my comment. I’ve been typing from my iPad. Its terrible for autocorrect
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