I have been doing so much studying about this diagnosis and dealing with the pain in my body and head. I was started on 50mg of prednisone 3 days ago and it is finally beginning to help. My biopsy for GCA is in the morning and I am somewhat apprehensive tonight. I haven't slept only an hour or two in the past few days so I am very exhausted. I am up about every hour as I am on lasix for CHF. Good night. More information tomorrow.
Sandra
Don't worry about the biopsy it really isn't bad. I had mine 8 days ago and had the stitches out yesterday. Only problem I found was that they didn't put a dressing on the wound so I couldn't get it wet for 5 days post op. First thing I did after they took stitches out was wash my hair. The cut was in the fold just in front of my left ear and I could even see it. Sympathy in the lack of sleep, the prednisolone is having the same effect on me but at least it saved my sight. Good luck and keep posting on this site, I've found it very helpful - like you I keep reading everything I can find on GCA, I was diagnosed the end of February.
Hi Sandra
The biopsy is not bad at all. It only takes about 20 minutes, you will not feel anything apart from a little pressure and your hair will cover the scar so there will not be any visual evidence. My diagnosis was 4 years ago and I started on 60mg and as you have found it helps and life does get better. Hope this helps with your worries, keep reading here, there is always a lot of helpful advice to help you through any difficulties.
Hello Sandra
I hope all goes well today. Don't worry - as the others have said, the biopsy isn't bad at all, it just feels strange to be in the situation of having to have one. The effects of not sleeping and the high-dose prednisolone will be making you feel anxious and fluttery anyway. You'll start to feel much more like yourself in a few weeks once the dosage starts to come down.
I had my biopsy a fortnight or so ago and don't have any pain or soreness from it now. The hospital team looked after me very well and I went home the same morning.
Good luck. Let the staff look after you and get some rest while you're at the hospital.
Zelma, the others have given you lots of helpful reassurance regarding the biopsy. I can't comment from experience - I didn't have one as my symptoms were so classic, and then confirmed by an almost immediate successful response to 40mg of Prednisolone.
However, the biopsy - especially when carried out very soon after initiation of treatment - is a wise move because if the small portion of artery removed shows the large cells they are looking for, it will at least give you a definitive diagnosis rather than have a question mark hanging over that diagnosis at any time in the future.
It is possible to have a negative result but still have GCA as the large cells can sometimes escape the tiny portion of artery removed for biopsy, but the fact that you are already starting to feel an improvement within just 3 days of commencing treatment is a good sign that they have the diagnosis correct.
It's quite common for the very high steroid starting doses to interfere with our sleep pattern. It will improve as you reduce the dose - meanwhile just ensure that you catnap as much as possible during the day to make up for the lost sleep at night.
Good luck with the biopsy and do keep in touch - there is always someone around to offer help from their experience with GCA and/or PMR.
Are the side effects of high doses of prednisolone affected by the time of day which one takes the tablets ? All drugs have a maximum effect time after taking. I take my drug for hypertension AT NIGHT because my blood pressure is at its highest in the mornings, so I feel it would have the most beneficial effect then. Perhaps the blood level & so the effect is wearing off by early morning (when it's needed most) if I take it after I get up in the morning. It may be worth trying, Zelma ? Good luck with your biopsy. Pain is always less when one is calm. Warm wishes.
i think it depends on the side effect - some people found that taking their pred in the evening reduced the shakiness they experienced shortly after taking the pred as it happened during sleep. The pred I take is a formulation that is taken at 10pm and releases at 2am - I perceive next to no side effects with it, not even weight gain.
Plain white pred formulations are absorbed quickly, reaching the peak blood level within about 2 hours. Enteric coated pred is absorbed more slowly over a longer period of time, and it can take up to 7 or 8 hours to reach the peak blood level.
I have to take my blood pressure meds in the morning because they have a diuretic and I would be up to the bathroom all night. I have to find a better time to take the prednisone as it is keeping me awake all night. I will try taking at night so I can get some rest before it kicks in.
I think, Zelma, that THAT is because your medication, Lasix, IS a diuretic which helps your CHF & also reduces your blood pressure, tho' it is not specifically a hypertensive drug, which is NOT primarily a diuretic but lowers the blood pressure in other ways.
Good luck trying a different time for your steroids, but as others say, not only will your body adapt to the drug but also you will be able to reduce the dose & so the side effects too soon.
Thanks for that clarification PMRpro, I'm sure that info. will be helpful to folks. We sometimes think we HAVE to take most daily medication in the morning !
Hi Sandra
Although the others have already said it, just wanted to add my best wishes. When I was diagnosed, was started at 80mg, but had already lost sight in one eye, and v.large dose was to preserve other one.
Hopefully your head pains should recede soon, mine lasted for a week or so even on such a high dose. Down to 60mg after 2 weeks, and although things weren't easy after that with various side effects, certainly no more headaches - as you rightly say, no other pain killers touch a GCA headache.
Good luck with your biopsy, like Celtic mine was deemed unnecessary. As yours is being done before the Pred has been in your system too long it should be an accurate reflection of your situation.
Please let us know how things go, and come back with any questions or worries you have. Whatever you go through, somebody on here will have been there, and be very willing to help. Don't bottle things up, if you just want a rant, then do it here!
Take care.
I also take lisinopril for my hypertension and between the two meds have managed to control the hypertension. I have steady unrelenting headache that cannot me decreased by anything I have. That is my biggest concern.
Hi Sandra,
Good luck with the biopsy and please let us know how it goes, I too will probably be getting one and also very nervous about it. Good luck and keep us posted.
Sincerely,
Sharon
Good Luck and Hang in there.
Good luck.. The biopsy is quick and painless. Don't worry. Scar is almost invisible and as it is now under hair growth doesn't show at all. Keep us posted X
My biopsy turned into a nightmare. It was done by an ophthalmologist who I don't think knew what to do. I was assured this doctor was highly capable but not as far as I was concerned. He just used novocaine or lidocaine and very light sedation? It started out very painful with not enough deadening and nonexistent sedation. I was in his surgical suite and he covered my face with a sticky drape that made it impossible to be heard. He made the incision and, leaning on my head, just kept cutting deeper and deeper. He couldn't hear me telling him I wasn't deadened. Finally after 2 long hours he said "well I just can't find it." He was going too deep and after 2 hours found it more superficially. He finally got a biopsy but I was in so much pain and frightened too death. I never thought I would make it out of there alive. I talked to my grandson who is an anesthesiologist in the city and he said the docs he works for use a neurologist surgeon to do theirs. Boy, I had such a frightening time that if any of you have to get one, go to a surgeon. The doctor who did mine could probably do cataract surgery with his eyes shut but he surely acted like he didn't know what he was doing.
A successful TAB depends on a competent and experienced surgeon - so if this turns out negative I'd be fairly sceptical I think. In the UK I'd suggest a complaint - no idea how your system works.
Sorry it was such a poor experience - I think using local anaesthesia is common but not if you end up going deep. The temporal artery should be almost visible under the skin and if it isn't then using ultrasound to track it and mark it is the usual procedure.
Not good...
I'm sorry to hear you had such a difficult time. If it's any help, a lot of what I experienced was the same, but because I knew what to expect I probably didn't find it frightening. I'm so sorry I didn't think to give you more detail about what the environment and sensations were like.
My biopsy was carried out by a vascular surgeon who does these types of procedures very frequently and even he had trouble locating my artery. It took him quite a while. He explained that the artery in this position is very small so it can take a while to find safely. I also had local anaesthetic only and had the surgical sterile drape over my head.
It's a strange sensation to have people you can't see pressing on your head with quite a lot of pressure (which may feel harder than it is because it's on your head where you have very acute sensations) and shoulders while you lie under a sheet but I was pleased that they were keeping everything so sterile for me.
I hope that you are feeling a bit better today and that you might feel a little reassured that you've done really well to have undergone the procedure. Don't be too disappointed if the results don't show anything. I was warned that only 50% of biopsies show up positive for the giant cells. However good the surgeon, the cells are large and may not be captured in the relatively small sample taken (a bit like the odds of a random bucket of water scooping a large salmon from a river first time), so for that reason many rheumatologists use the biopsy test as a back up for their diagnosis rather than the only basis for their treatment.
I am feeling better about the procedure but my eye on that side droops and I think he cut a nerve or tendon. It may come back because I have a hard time reading. My headaches are continually plaguing me. I am not sure if I am getting enough prednisone because my arms, shoulders and hips really are painful!
I am recently diagnosed and this information is really helpful. Patsy 69
Very tired & can’t walk in straight line.
Tired
Too little Pred?
Tapering too quickly
