Want to clarify. Prednisone from rheumatologist was not changed to 80mg. As I read rx wrong. Lab results came online today. CRP from 52 to 2.9 and Sed from 38 to 9 all in about 5 weeks. Awesome! Have so much less pain then I ve had for years. Slept the past couple nights & not as shakey or weak. The past couple days feeling better & better. Some pain & blur behind one eye is all. But with all these RX pred. , bactrim ds, blood work, dr apts, sick helpless mindset... just not sure this treatment is worth it. I mean, dr said likely get osteoporosis or diabetes. I was scheduled for ankle arthroscopy yesterday &miniscus for knee in a few weeks but he said "No" to any surgeries for extended time. I have suspected glaucoma & now I'm taking pred that can cause glaucoma. Pred & antibiotics so bad for belly. I have esophageal dysmotility, recently recovered from grade c esophagitis & swallowing difficulty that won't get better. Dr said if you get thru 2, 3 or 5 years & start feeling better, you have very high risk of aortic aneurysm. For me, the treatment may be worse than trying to live untreated. I've had this for quite awhile. I'm not depressed but am sad that this is the way things are going. I want to be active, and for me, not sure raising risk of so many terrible other diseases are worth a longer life. Not trying to be a downer & hope I'm conveying my intention for a well lived life.
Gca RX risk benefit: Want to clarify. Prednisone... - PMRGCAuk
Gca RX risk benefit
Good morning Spanky!
You know what I think? I think you’re in the throws of trying to digest all the information that has been thrown at you over the past day by your rheumi; a bit sad as a type of grief at what might have been a ‘healthy’ retirement; and a bit ‘muddled’.
Let’s unpick a few things and concentrate on the positives!
Your CRP and ESR have fallen! Normal limits! That tells me two things: your treatment is correct, and your body is not having to cope with dangerous inflammation. So you’re avoiding the awful side effects of GCA. OK you have side effects of pred, but they’re not so awful and are generally manageable. Plus you don’t have to go to 80mg, your 60mg is doing very nicely.
You’re feeling better and in less pain. These two things are your guard against osteoporosis. Sitting around being poorly, not moving, potentially gaining weight, those things cause osteoporosis. You can now keep active, this ‘works’ your bones, keeps them strong. You’re going to add in calcium, vitD3, vitK2. Have you had a bone density scan? If not ask for one, then you know your starting point.
Diabetes: studies show that we’re no more likely to get it than similar people not on pred. Yes pred affects your insulin levels, yes you have the option to chow down on all the wrong foods, but I don’t think you will! Low carbs is the way to go, high good fats, above ground veg, good protein. All of us on the forum are on pred, not too many with diabetes, and those that do have it may well have had it before PMRGCA.
Treatment settles. You won’t be constantly at the Dr’s. You’ll move on from this diagnostic phase and get back on with life.
Post op infection rates are higher for those on pred. Your rheumi has got your back telling you not to have those surgeries. (I had meniscus tear and cyst in knee years before pred. I declined arthroscopy, I believe opening joints leads to arthritis later in life. I managed mine by building musculature about my knee)
Glaucoma can be managed with eye drops.
Can you get gastro resistant pred? This moves through your stomach and doesn’t break down til it reaches your intestine. A god send for preventing upset tummies. By the way PPI’s can cause osteoporosis! They reduce the acidity of your stomach, reduce absorption of minerals. Plus your body is designed to have an acidic stomach, it’s an infection defence, best not to reduce our bug barriers when we’re on pred!
Aortic aneurysms. I’m sure the risk would be higher with untreated vasculitis. BUT you’re being monitored for this potential. You’re in a better place than those who have no identified risk.
You want to be active....feel free!
Your doc would not have prescribed meds if the risk outweighed the benefits.
It’s not about a longer life, we have no way of knowing! It’s about enjoying the life you have currently, pain free, managed and active.
What’s the Bactrim for? Prophylaxis?
Bactrim ds to take mon, wed. Fri DR said is prophylaxis against some kind of pneumonia. I'm taking prednisone as prescribed now but didn't fill other dx yet. Rheumy very thorough and nice but sounds so pessimistic. Don't remember being as pain free as I am this minute. No headache, tongue pain, arm pain...but am having hard time thinking clearly. Only been sleeping better a few nights too. Also, my primary DR agreed with me that fixing one thing, i.e. my ankle would make me feel better. She is on vacation & doesn't know about rheumatologist findings. Your description makes side effects of pred a little less dire. Still having hard time on screen to do thorough search on this crazy disease. Thank you so very much to all of you. I feel like a vulnerable child at times lately.
Do you have chronic chest problems?
I have Intermittent chest pain from the esoph dysmotility. That has been very infrequent over the past 5 weeks, I think because I. Haven't been eating much. Also, swallowing issues aren't a scare if I am selective.
Well it’s something you might want to revisit with your doc at some point. Risks v benefits again!
It has the potential to eradicate the good guys from your gut, and you do need the good guys to aid K2 absorption.
They have obviously prescribed the bactrim as prophylaxis for PJP ( Pneumocystis jiroveci Pneumonia ), it’s a rare type of pneumonia that patients who are immunosupressed can get.
I have never heard of it being given to patients who are only on Prednisolone, it’s usually given to patients with diseases such as ANCA associated Vasculitis which are treated with chemotherapy and have lung problems as part of the disease.
I would ask the Consultant for the evidence base to support this, as far as I am aware it isn’t in any of the clinical guidelines for treating GCA.
We know you’re not trying to be a downer; it’s a rotten situation so you’re sad. I agree with everything Soraya says and have seen patients like this before. You’ve been knocked sideways and a bit of you says, “you know? Is it really worth it?”. It IS devastating to have one’s life that was planned seemingly no longer an option; one goes through grief. I felt like this after my second hideous round of chemo with my carrier bag full of pills, a diary full of medical appointments and a head spinning with the doctor’s words of foreboding. If you decided not to bother with treatment you wouldn’t have any freedom back at all; you’d grind to a halt and an aneurysm would probably be a certainty not a possible. As Soraya says some side effects can be largely prevented or there is effective damage limitation. My doc was the same; I would definitely get osteoporosis and diabetes with massive weight gain. I have none of these two years down the line starting at 60mg. I would definitely give coated Pred a try; my stomach was awful and no anti acid med did the trick. It was terrifying because I have a cancer gene and my uncle with it died of oesophageal cancer. I tried coated and never looked back with a tot of Gaviscon, brilliant!
As for the postponed knee op, arthroscopy isn’t the be all and end all. A friend of mine had meniscal knee problems so he couldn’t play cricket. The doc said that poking about in joints has its price and not necessarily a resolution to the problems. Like Soraya, he went for a guided physio program and then his own and he’s back to cricket. My cleaner is the same, they won’t do hers because of the risk of arthritis is too great and she’s 56.
Let it all settle for a few months at least and then reassess. Of course we’re all here too.
You have been through a lot. So grateful you all so generously sharing your experience. Primary switched me last week from 40 mg twice daily of prilosec to dexilant 60 mg. Dexilant is for 8 weeks which has really helped the gastro stuff so much. As far as surgeries, our son is a DR of physical therapy. He owns 3 clinics a 1000 miles away from us. (Our kids have $, we don't. Lol) Anyway, he was reluctant for me to have miniscus repair, but ankle was a go. Anyway, I need to get outside tomorrow and see how I move. Dex scan scheduled for Thursday.
Hi spanky, I agree with the great advice you have been given. I would be more surprised if you weren't in a state of flux. Don't forget you won't be on such high doses of pred forever. It's working inflammation wise. The pred head/brain fog is most likely a combination of GCA and pred. So these unwanted effects of illness and meds won't be forever. As has already been said you are going to need time to absorb and process the information and the impact of everything you have been told and experienced. This is one place where apologies for talking about how you feel are never necessary. 🌻🌻🌻
Yes, I agree. Little hard to admit brain fog but I know I'm not myself. My first post tonight md perfect sense when I posted it. After the great advice & support , feels like one foot in front of the other and forging forward is what I should do. Thank you.
One foot in front of the other is a good plan. I can be heard muttering to myself on occasion ‘keep going’!
"One foot in the grave" is more like it for me at the moment!😏😏
Oh Constance 😮
What’s up?
Pain, pain, pain!!
Start a new thread? We might be able to fish for some ideas?
Constance can you repost how you are feeling like poopadoop asked. Soneone will be able to give you advice i am sure. Dont suffer on your own.Deb
Thanks Deb! I am knocking 80 and can 'cope'.
I can normally walk 500 steps, have a rest, then walk 500 steps 'back'. On Friday I walked 1000 steps to one of our favourite restaurants, had a delicious meal, then walked 1000 steps home. I was pretty exhausted when I arrived!
The following day I couldn't get out of bed - stayed there most of the day.🙃 Today I'm up but everything still hurts. Own fault!!!
As long as you are coping that's fine but dont forget we are all here if you need us. The thought of a lovely meal out would get me going as wellx
It's a holiday weekend over here and I had decided "no cooking" for the three days. I managed one! Still, saved about €180. 😂😂😂😂
I know exactly what you mean, Constance. I'm the same age as you and I know if I walk too far the road ahead looks endless and I feel I want to sit down on the pavement. I try to keep going but sometimes just have to have time to recover from an active (well for me active) day. Take care.
Hi Maria! The thing is - I don't 'have to' walk - I have a rollator, a wheelchair, and even an electric mobility scooter!😂😂 I just feel if I use these things too often I won't be able to use my legs at all in the future. I can't go out at all though if I don't use the rollator. I can then sit down whenever I need to.
I have seronegative poly arthritis, as well as aggressive PMR!😟 I'm in pain all the time, nothing seems to ease it these days. The joys of getting old! 😏😏. Still, we ARE old, so these illnesses have just to be accepted. Life can still be enjoyed.😎🍸🍾
Hope you are coping and still able to enjoy life.
All the best fr Constance.
Hi Constance,
I have osteo arthritis which affects both knees as well as PMR/GCA but I have no walking aids other than my trusty stick. But I do manage - just about,
My problem is indoors; I have a first floor flat with my own staircase which is becoming increasingly difficult and I need it not only for going out but also to get to my garden at the back of the building, which in this weather I want to do daily. I had hoped to have a stairlift fitted but have had two surveyors from reputable companies looking at the stairs and they tell me it would contravene regulations to have one fitted as my front door is too close to the bottom of the stairs. The mystery is, that there was one here when I moved in nine years ago which I, with gay abandon, had taken out as my PMR, apart from the early days before taking pred, has never given me too many mobility problems. The surveyors both said that the regs have been in place for at least 20 years so this must have been fitted by a cowboy - just wish I could track him down as it looks now as if I shall have to move and I love my flat.
As you say - the joys of old age!😏
I'm so sorry you're feeling that poorly. Sending caring thoughts your way.
Thanks. 💐💐
It made perfect sense when I read it - you are scared and confused and it is all new.
Every journey starts with a single step ...
I don't know , I have looked back over your posts and I can understand people's alarm at taking steroids , especially when Doctors try to reinforce the terror of it all rather than explaining the side effects and how to contradict them sensibly , but from the GCA perspective , I would prefer to have the treatment than try and struggle on and go blind or have a stroke.
The side effects of the treatment in this disease , especially after your body has settled down to the treatment after 4-8 weeks are far less permenantly life altering than the effects of GCA.
And don't forget , when your symptoms are fully controlled you will begin to reduce from high GCA doses quicker down to doses similar to those with PMR and then follow the same taper.
You can get treatment which works and is on the whole routine for Glaucoma .You can't often get back from losing your eyesight and we all need it.
I like you lost weight rather than gained it , it can happen , and often has more to do with your individual metabolism or if you have other conditions that affect they way you metabolise drugs and foods than because steroids are harming you . Just like the weight gainers , weight losers can use diet to prevent the unhealthy parts of this side effect and offset possibility of diabetes , gastric issues etc. by eating smaller regular meals with lots of protein, fruits and vegetables , nuts and Omega 3 foods.
Getting your body balance right and adapting your diet , activity and lifestyle helps reduce side effects of the drug and symptoms from GCA/ PMR so you can take the steroid and allow it to help you treat yourself and prevent the far worse effects of GCA .
But from experience I know , lifestyle and natural choices alone will not control the pain of PMR or the life altering affects of GCA.
By getting your symptoms properly managed swiftly now with the appropriate medication you will be able to have your surgeries along the line. Your Doctor's just realised you need to prevent this illness from causing you permenant health issues or surgery reactions first before doing them. People on this forum talk about successfully having all the surgeries you discuss regularly on the forum , with happiness and success.
Nobody ever talks happily about losing the sight in one or both eyes or constant pain .
I am assuming that with your other health issues , especially gastric ones you have other health concerns that need controlling too , by being proactive now and creating the right pharmaceutical and natural programme of care for all of your issues you are going to be taking a more positive route to recovery for all. Gulp, Assess , Take a deep breathe and Take on the fight now , don't struggle on then still have to fight later any way. It's saves time , anxiety and pain in the long run.
With the pain management assistance of appropriate drugs you can also do alot more to help yourself systematically with exercise , diet , wellbeing and lifestyle techniques to make your body strong enough to cope with symptom issues and prevent many of the other side effect illnesses that come from steroid use or your other illnesses.
If you really feel anxious about steroid use long term ( or in time it is confirmed that the steroids are the cause of other health issues) , or you feel after a number of months of the steroid helping you repair your body , making the foundation steps towards a sensible , preventative recovery, you can always then choose to discuss the other methods of using steroid sparers medications or biologics.
But getting your illness in control first , you will open up your choices and be able to think about them more logically , you can get stronger in body to make these adaptions and make sure you don't have a rebound of symptoms that cause sight loss or strokes is crucial to getting proper remission and quality of life.
I understand if you haven't had to rely on drugs over the years to live day to day suddenly having to take strong medications and being hit by initial side effects is very scary. I was just like that years ago when other diseases made it necessary for me to be on pills for life.
But , I also know those pills have allowed me a life with quality in it , and after initial adjustments and the odd extra pill allowed me to enjoy my healthy time not struggle every day or end up with something far worse and irreversible.
It's hard to accept and adjust your thinking to looking after your body in the way you need rather than want to , but once you get used to your old self living by the rules of the " new normal" it's worth it.
Take care , bee
As has already been said - this is early days. It won't stay like this and it WILL improve. All you have been told is because they CAN happen - but they don't always. In the USA they tell you everything because of the litigious culture.
Some months ago I discussed the use of Bactrim with a top UK PMR/GCA specialist and she said she isn't aware of the use of Bactrim for GCA in most of the world. It IS used for other forms of vasculitis with more extreme immunosuppressant medications. I would ask if it is essential.
But the bottom line remains: How will life go if you are blind? And with untreated GCA that is a very real risk - the others are still theoretical.
Yes, thank you. That's way too much attention on just me all these hours, but very grateful.
No, this is not too much attention. The community is here for all of us, and that includes you!
With regard to the bactrim, do what you can to keep your gut microbiome functioning. It's true that each dose of antibiotic will affect the organisms, including ones we need for good health, but apparently if you consume something containing beneficial micro-organisms in between doses of antibiotic they do have a chance to repopulate the gut in that time period. So, a little yoghurt, a little Brie, a drink of kefir, maybe a spoonful of one of the many delicious fermented veggies we can get (sauerkraut the most well known but there are many others). Not too much, especially if you aren't used to eating such foods. Fibre-containing foods are supposed to be helpful in promoting gut health also, called "prebiotics". The fermented foods are "probiotics", and both of these counteract some of the unwanted effects of "antibiotics".
Speaking of pneumonia, have you had a pneumonia vaccination?
Yes, I had pneumonia shot. I have a lot to learn. We have been following low carb, jus healthy food diet for several months. Hank you.
My husband regularly got pneumonia every May (beginning of allergy season) until he was given a pneumonia vaccine. Since then, as a high risk patient, he has received a second shot as well; there are two, which cover different strains of pneumonia.
I'll find out more about that Have a magnificent day or night.😎
Day - Atlantic TIme Zone. Which time zone are you in?
Central time zone No sleep last night but he help, support and information worth it. I feel the love❤
Don't forget there are more newly diagnosed people on the forum who benefit from questions and concerns you flagged up. I remember pmrpro telling me it would get better when I first joined. I didn't quite believe it at the time but she was right. I would have been in big trouble without the help here. Not just because I asked questions but because others in similar positions at the time did.
Yes!
Oh Spanky, I feel for you so much. This is what I am experiencing. I think I was a little better before I started Pred because my mental/emotional state was still quite good. I was stiff, fatigued, found getting up from bed or a chair hard, and in a little pain; after the first dose of Pred started wearing off I found myself with horrid digestive issues, headaches, very bad shoulders, some eye lid oil gland condition causing dry itchy eyes, a problem with a blocked saliva gland causing some new problems in my gums/teeth, and now I've somehow managed to attract eczema into the mix. I feel persecuted.
Hi Bennijax. My post was written many months ago but I appreciate your empathy. So sorry you too experience so many ailments. I sure never would imagine this disease lasts so long and effects so many body parts. I am a little stronger lately than I have ever been. Been on pretty high dose prednisone most of the past 9 months. Going on actemra in a few weeks. First having surgery next week for skin cancer. Let's both of us just do the best we can. Take each day and find the good things. Sure grateful for this forum. It's been so helpful. Stay in touch.
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