Symptoms

[Libertylane]

Do your symptoms come and go? My rheumatologist doesn’t think I have GCA but will schedule biopsy as soon as possible and I hope that’s true. She suggested I stop prednisone for now but I don’t know about that. Still have headache off and on all day. Pain is not that bad but distracting.

[Blearyeyed]

Have they told you to just stop or are you to reduce over a few days ? I know you have only had a couple of doses but going from 60 mg to nothing could be quite dangerous symptom wise even after two days , it can affect your thyroid symptoms etc.

At least it is a relief that even though they think you don't have GCA but are checking properly with a biopsy.

Did they suggest any other causes for your symptoms on this occasion or any other Department to refer you to to help with your Head Pain , like Neurology or the Pain Management Clinic .

Good luck with it all

[Libertylane in reply to Blearyeyed]

Told just to stop. Going to ENT Now I’m worried. Don’t know how much to reduce

[Blearyeyed in reply to Libertylane]

You don't need to go to ENT at this point , You took today's dose , you could ring the GP to ask for advice in the morning . They could be happy that you do stop in one go as you were only on it for two days , or your GP may advise that is fine to do that , or just ask you to stagger down over a few days just so it's easier on your system. Do not get anxious about this , just double check with them in the morning , or via a phone call to NHS Direct or your local phone helpline if you feel you need to check tonight . Please do try to remain calm , worrying so much will only make any symptoms you suffer feel worse and won't help you.

[Libertylane in reply to Blearyeyed]

Have call into dr and checked with pharmacist who said it was okay. If dr comes back with same answer I will feel relieved. Only hope I don’t have GCA or it could be a bad move. ENT department will do biopsy.

[Blearyeyed in reply to Libertylane]

Have they told you when that will be ?

I assume if they are convinced that it isn't GCA they are doing it just be thorough and give you peace of mind over stopping Steroids and their Diagnosis.

Have they given you any indication of what they want to test for , or what your next steps should be to Diagnose your symptoms?

Has anybody spoken to you about Chronic Migraine or have you been diagnosed with that before ?

[Libertylane in reply to Blearyeyed]

I get visual migraines mostly under stress for years. Will check out chronic migraines don’t know when biopsy is yet but it is supposed to be fast tracked. I think dr went mostly on my blood work and the fact it is only on one side to decide , although crp was a little elevated at 6.4. Pain comes and goes. In side of head eye ear and throat there are some diseases ear nose and throat people see with this

[Blearyeyed in reply to Libertylane]

There have been a wide group of studies in the last decade on people that suffer with Chronic Migraine ( migraine headaches occurring regularly throughout a year).

Chronic or Severe Migraine Syndromes can have a number of complex clinical features , and because it involves inflammation ( of any level) of the blood vessels outside the brain , or around the eyes and sinus depending on where you Migraine presents itself studies have shown that hs- CRP blood markers can be elevated .

This was found to be more common in Migraine Syndrome sufferers who had headaches that occur over 15 days or more and suffered from Insomnia ( some Migraine pain at some point in the day over 15 days , not necessarily Pain 24/7).

Migraines can also cause blurred vision , neck and shoulder stiffness and Pain , fever , loss of coordination of balance , brain fog , Fatigue and palpitations among other things.

Migraine Syndromes aren't life threatening but can impact on your Life Quality a great deal. Even if you are being checked to rule out GCA , it would be a good idea to ask your GP to refer you to a Pain Management Clinic for Migraine Self Care advice and the correct Migraine Medication.

You can have Migraines at the same time as other conditions so making sure you get the right help for your Migraines is important to stop the headaches making your overall system feel worse , or to treat your Migraines triggered by other conditions.

Your Anxiety can also cause Chronic Tension Migraines as can Insomnia.

Are you receiving Migraine Medication and support yet?

Have you decided to continue with your Anxiety Medication while you cope with your current Health worries ?

[Libertylane in reply to Blearyeyed]

I am taking some anxiety but keeping it small amounts. Thanks for all the migraine information

[GOOD_GRIEF in reply to Blearyeyed]

Please be aware that a negative result from a biopsy for GCA does not mean you don't have it. A negative result can mean they just missed the area where the inflammation resides.

[Libertylane in reply to GOOD_GRIEF]

I know. This worries me. Had er doc tell me he doesn’t think I have it and now rheumatologist What to do next? It’s not so much headache but kind of sore inflamed eye which I’ve had before but staying now even with cortisone eye drops. On roller coaster. Have most of you had the biopsy ?

[Blearyeyed in reply to Libertylane]

Why did you receive Cortisone eye drops , is this prescribed for something else ?

[Libertylane in reply to Blearyeyed]

Sore dry red eye. Had this a couple years ago too

[Blearyeyed in reply to Libertylane]

Have they considered that your current steroid eye drops may be too strong for you or could be causing some mild intolerance from the ingredients?

Eye drops given for Red Eye can cause more intense headaches or more eye pain , especially on the side with the worst affected eye if they aren't right for your individual needs. They did it to me , l had to have drops changed twice because of how they increased my Pain and irritation .

Have they also recommended that you use non medicated eye drops during the day between steroids to cool and lubricate the eyes to reduce pain and irritation.

This is important and does work .

I have Celluvist single dose capsules on prescription even when my Dry Eye Syndrome and other eye complaints aren't active to reduce the return of symptoms. They do begin you with Carmellose drops of gel first because it's cheaper but these drops are the best if you can get them. You lubricate a few times a day when the eyes are stable but when required if you have symptoms. I also have Vitapos A gel to put on at night time to soothe and give nutrients during the night.

Using a warm cloth or eye pads on your eyes a few times a day while you have symptoms also reduces the pain in eyes , behind the eyes and in the head.

As do sunglasses in bright light and reducing screen time on all your devices and only using them or reading for 20 minutes at a time to give your eyes and head a rest.

Drinking 2 litres of water or fluids a day is helpful for Headaches , Migraine , any inflammation and Eye problems.

Using relaxation techniques and occasional slow blinking exercises after soothing eye drops also helps eye and head pain involved in any Health issue .

Which type of drops are you being prescribed ?

[PMRpro Ambassador in reply to Libertylane]

A sore inflamed eye is not a symptom of GCA - the problem in GCA is elsewhere. If you have a sore inflamed eye you may need to see an eye doctor to identfy what it is and what it may be due to. But it is extremely unlikely to be GCA so I htink you can stop panicking about that. Cross one bridge at a time.

[PMRpro Ambassador in reply to Blearyeyed]

It is OK to just stop pred after a few doses whatever the dose was - it is risky in terms of GCA symptoms possibly but not in other things after such a short use.

[Mojo63]

Please don't have biopsy, they omit to tell you that the infected parts do not run right through the arteries and may appear every few feet!

I was never the same after mine!

Please read bloggs 2011.

I started in September on 40mgs

I am on 10 mgs from January & will be on them till march .

Hope this helps

Xx

[PMRpro Ambassador in reply to Mojo63]

I think "a few feet" is a bit of an exaggeration, the temporal artery is more in the inches range! The vast majority of people who have a biopsy have no problems at all - though I do appreciate you may have had a bad experience.

[Mojo63]

Yes if you take pred short term you can stop. If your inflamation rate is ok and you still have headache, i have been diagnosed with Optical Neuralgia.

Xx