doing me no faves.
Last time I had pmr/cga no symptoms atall .this time lots and lots 😩
Now looking into Cushion Syndrome
A rare one I know but seem to have most of em didn’t realise there was that much to it
Seem s a condition on its own. 😱
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What’s the fastest safe way to get off now on 30 mg 6 tablets?
The fastest, safest way is DorsetLady’s taper in FAQs. Slow but very sure. Show it to your doctor. The high dose will be making you feel weird and anxious but it is keeping your eyesight safe. A moon face doesn’t necessarily mean that you have Cushings’ Disease, we all get the round face etc from the steroids. You looked perfectly normal in the photo you just posted, just a bit grumpy. Reading about these diseases is frightening. We should both stop it.
Please guide me to DorsetLady's FAQ about tapering. I don't know how to find it. Thank you
It’s here - healthunlocked.com/pmrgcauk...
…but you may not need to use it on higher doses, most don’t, but have a look anyway.
Thank you!
The author herself has shared it. Many of us have used it to good effect.
And me. Doctor to day things whent well Thanks
Good to hear Ronzy. We all get the bad days. 🌼
Is from 6to 5 big.
It depends how you do it. I would cut the 1 mg in half with a sharp pill cutter from a pharmacy or Amazon, and reduce by that one day then 2 days then 3 days until you are fully on 5 and a half every day of the week. If you feel ok then drop the second half mg each day until your dose is 5 mgs. Sometimes you need a rest of a couple of weeks but you can keep going down like this until zero. If at any time you start feeling dizzy, deathly fatigued, stomach ache, this maybe your Adrenal glands struggling and you should get them tested. You won’t be your normal self for about a year but you will be free. This is my plan too. I think the 6 mgs to 5 mgs is tricky because of your own Adrenaline having to take over from the Pred and you get aches and pains from that too. Good luck! 🍀🍀🍀🍀 Keep us posted, I am in the same leaky boat.
Thanks Jane it’s doing mi head in to diagnose of GCA really it’s me so sure it’s much worse than last time my very big concern is my energy level diminishing every day doctor say that’s the hard one. 🍀🍀🍀🍀🍀
I have never felt worse in all my 6 years with these diseases. Like you, I badly want to be done with Pred and all the complicated drugs. Maybe the GCA never properly went last time and has come back with a vengeance. It is frustrating but this bit must be done slowly or you end up flaring and back at the beginning like snakes and ladders.
Jane I know you’re real as we met in leeds. I’m Also in same boat. On myself feeling much beter pmr terrible if this makes sense.. I have been seeing my doctor a lot recently.. which I think I am very lucky and she is an excellent Doctor I am on my last tablet of an antibiotic the ones I am on on you just take one a day.
I am so glad you have a good doctor - it makes all the difference!
Moon face thi mornin.g . Darent put all om here. Now people will think I’m freaking.
Mine varies and is sometimes uneven on each side. I seem to have two egg size soft lumps just about my ears. I am deflating like a balloon at 5 and a half mgs.There is nothing wrong with freaking. I am not showing my lumps though, too depressing.
Mee too Jane ,can’t make any plan 🤷🏽♂️I’ve had lots of symptoms too now taste bud use to eat 2 bananas a day apple oranges the last oranges are so Asid to me. 🥲
Get the lumps it’s pergotr some time it drives my wife crazy it getting me so stressed and angry swaring. Then I am due to see rummy at end of month. She will probably say how are you can you lift your arms above shoulders 😱😩🥸 have you had that I will blow
My taste changes too. Tomatoes tasted sour for ages. I quite like them now. My favourite food is boiled eggs, nice and bland. Spice and acid are horrible.
Hi Jane it is an absolute terrible thing not self diagnosing any more all I am saying is it is several times worse than last time.
We all look up our symptoms and drug side effects and frighten ourselves silly. Have you really stopped? What will power!
Do you mean symptoms or side effects of Pred? ..and what in particular?
On high doses many get Cushing’s syndrome, but things usually return to normal as you reduce the steroids.
..plus you need to speak to doctor about reducing safely.
No way have I that looked on nhs site picture sorry Do need to get off pred asap my BLOOD OXYGEN
LEVEL IS JUST GETTING WORSE EVERY DAY
That's fair enough Ronzy - but there is no magic formula for getting off pred when you have to stop it for such reasons. You can reduce rapidly down to about 10-15mg - it is only after that it is difficult or risky. It may be uncomfortable above that but that is a different matter. If the doctors want you off pred, then it is up to them to show you how.
Exactly Tom as I have said I’m going to doctor also ringing a help line to RummyI am so lucky to have you people to talk to 🌹
Do you ever wonder if I am real 😵💫 as I say I really am now getting scared
As you know I have had pmr before. But this time so so different
I’m begging to be a sar ger so far honestly nothing Has seam to help
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What’s rapid
I’m down to five now it’s damed hare
Symptoms and very much side effects moon face Etc
Ronzy - please stop self-diagnosing and second guessing your problems.
Yes, you apparently have Cushings syndrome, it is caused by the effect of excess corticosteroid on your body, That is because you are taking pred for PMR/GCA.
It would be a concern if you weren't taking pred but showed the symptoms - because then it might be coming from a tumour or some other thing wrong with the HPA axis - the hypothalamus, pituitary and adrenal glands and the substances involved with them.
If you want to get off pred then you must do it safely and with the help of a doctor. When you were on a lower dose you were complaining you had symptoms of GCA. Now you are on a higher dose because of your former symptoms, you are complaining again. You can't have it all ways!
Your right my friend but no one seam to be getting. There no Answers yet only lots of steroids which isn’t helping my breathing my lates notation is steroids cording it as one doctor said heart lungs liver etc all fine it’s all steroids 🤷🏽♂️
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Would it be.better to try for 2:5
You just have to try and see how you get on - but yes, 2.5mg a week or 5mg every 2 weeks is possibly more comfortable and will get you to the same place. Depends how fast you want to get off doesn't it?
The safest way is to go very slowly. You really must not do anything without talking to your doctor
If you have GCA you don't want to get off pred quickly, it's likely saving you on many levels. I don't think anyone likes taking it and you do need to give it the respect it deserves in that it is likely the only thing right now that is going to help you. It must be frustrating to be back at that dose but you won't do yourself any favours by trying to get off it too fast. Have you tried a low carb diet. It is something I started almost straight away and yes I have a tummy, but not a moon face, and that's good enough for me. The high doses can make you feel a bit wired so maybe try and find the thing that helps to relax your brain a little. Anywhere nice to walk. I'm very lucky in that I have a forest opposite my house which is cool and peaceful. Tough for you to be back at square one, but perhaps it never fully went before and your body has told you as much. I also find breathing exercises really help. Slow breath in for 4, hold for 4, and slow breath out for 8.If that's too much just try what you can. It's something always got the young people to try at Childline who suffered from anxiety.
Mm chill problem there must try harder ,very good diet my big big problem now is my Blood OXYGEN AND ENERGY. . my walking distance gets les’s every day ..
Doctor tomorrow. Just finished a corse of antibiotics
I don’t understand, Ronzy, I’m sorry. I’ve helped you as much as I can. Most of your recent posts were about wanting to increase pred, and moaning that the doctor wouldn’t give you more pred! Last week you went by ambulance to hospital but they said you were fine. You didn’t post anything after that, so I assume the hospital found nothing wrong with you? You keep spending a lot of time googling symptoms & selfdiagnosing, which you agreed was bad for you& said you would stop it! As usual I suggest you see a doctor, especially if you won’t follow Dorset Lady’s slow taper. Otherwise you risk adrenal crisis…and you’ve read plenty of posts on here about that. Lots of us..me included…have a ‘moon face’ from taking pred…but doesn’t mean we all have Cushings Syndrome! In the two photos you posted last week your face didn’t look round at all! As usual,same advice from me, please please see a doctor…they are only people who can diagnose Cushing’s syndrome & MUST be involved if you want to reduce steroids quickly. A few weeks months ago we were helping you because you said you had GCA, & were having a biopsy to prove it! If you, as you say, have GCA, then I fear it would be very dangerous to reduce pred quickly (I don’t know much about GCA). You can’t have it always, Ronzy…
Sorry 😩🥹 all you say is true I am driving my wife crazy at times. Only thing I’m sure of Is I am getting worse every week. I know I’m begging to sound a rite drama Queen.
And I appreciate all your efforts and concerns I can’t wate for a slight improvement 🥹
To be completely honest, I thought because you post so often, & jump from medical condition to another one, that you had no support at home except for Google, who always confirms you have multiple diseases, mostly when you are reading it during the night! Your poor wife, she must be going crazy. For heavens sake tell it all to the doctors, tell them everything you keep telling us!! The doctor is your only solution! We cannot diagnose you, or give you medicine/tablets. Antibiotics? You’ve never mentioned an infection? Lungs? Would explain breathing troubles. I am asthmatic & have been on many short courses of pred to help that…& it has always worked (but not overnight)! Some of my chest infections last about two months, & I’ve been hospitalised at times. Thanks…at least you agree that I only write the truth…I do try to be (brutally) honest, as I’m hoping it will drive you to go to the doctor & seek help!!!!! Take care!
I have been to doctors to day I AM DEEPLY A-FENDED DO NOT TELL OR WRITE LEYES. I I have done a lot of post not for fun I assure you. I am a bad speller also not been easy. I have a fantastic wife. Thanks for all your help. Thanks.
I didn’t say you tell, or write, lies, Ronzy!! I said I was glad that you agreed that I write the truth. Nothing else. Glad you have seen the doctor. What did he say? Did he Diagnose something else? Did he agree you need to get off pred quickly, & has he given you a plan to follow. I’m very pleased you have a fantastic wife, I was worried that there may be nobody to look after you!!
Hello Ronzy...I don't often post but do read a lot on here. I can't help but see how these people that know you better than I do, and have commented wisely are doing so because they care. They care about everyone going through this 'awful, frustrating and hard to understand at times' ilness because they understand and 'get it'. Please take their advice. I wish you the best and remember slow is key 🙏
I try mate to and appreciated but honestly getting no ware Best of it is I have had pmr before but no ware as bad as this time
Doctor to tomorrow morning nowt wrong with me but breathing
Gets worse every day. Thanks
Ronzy, I have breathing issues probably worsened by muscle weakness caused by pred. I also have asthma and less breathing room from scoliosis/surgeries.. I expect it to improve on slowly lowering pred. I also felt exercise really helped the breathing but panicking about the Oxygen and shortness of breath makes it worse. This is because panic and hyperventilating constrict the airways. Do you measure your Oxygen readings? Are they low. In the meantime YouTube videos from accredited breathing centers will help you.If your oxygen goes and stays below 92% go to emergency.
Thanks f all that I do too much POSTING A GREAT SITE. 🍀🍀🍀🍀🍀
Hope it goes well with doc...bullet point all your concerns and questions...make use of his time...its good you've got in to see them ...all the best!
Thanks a lot my friend I do too much posting. Been in hospital not telling all no more makes as tho I make it up.
You can buy a finger clip on line that measures your blood oxygen. Amazon do them cheaply. When I was experiencing the sensation of oxygen starvation as a side effect of high dose Prednisalone, I found it reassuring to see that the reading was in the normal range. My panic was making me feel worse. I also got a totally blocked nose at times. I always sleep with the window open and in stuffy, hot weather I have a fan blowing in my bedroom. I used to prop up my pillows too.This all really helps. I am sorry you are feeling fearful and anxious it is a horrible sensation. It doesn’t help when people tell you to pull yourself together, it just makes you feel more alone and isolated. I hope that I haven’t done that. You are welcome to post as often as you like, it is the only reason the forum exists. Nothing was found with the heart tests I had and I don’t get this symptom anymore, now I am on a much lower dose of Pred. Let us know how you are getting through this tough patch - often. 🍀🍀🍀
Got it all how can I make my wife understand me. Iam so stressed can’t stop taking
Finally off Pred
Coming off Pred
Getting off Pred
Off pred
Two weeks off pred …
