Hi..new here but just off the phone with rheumy.Within a week my symptoms have blown up.swilling to hands and feet and bumps on fingers.pain in should (told it was frozen shoulder for past 4 months)elbows inflamed and up all night with bad pain in left temple and base of skill.. left.Feeling sick and absolutely terrified about diagnosis and treatment.i already suffer from bad anxiety and depression and insomnia terrified this treatment will make me worse.cant stop crying and concentrate on anything and it says steroids and other meds for R.A and GCA can't be taken with anticoagulant.
My rheumy just told me that I can't have GCA since my bloods are normal but I have spent hours on this site that says otherwise.Any help appreciated.xx
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LaPainting
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This sounds awful! I really hope they find the solution soon.
Regarding Apixaban and steroids- I have taken them for a month after each of my last 4 surgeries and it was never mentioned that being on steroids would be a problem and it wasn't as far as I can tell.
Try not to worry- I know that's easy to say but worrying doesn't help anything at all!
Oh dear - then I'm in trouble!!! Actually, I think you will find it isn't CAN'T, it is care must be taken and that is a very different thing.
I take Pradaxa and corticosteroids and have done for several years - no trouble at all. The only problem I did have was that the higher dose was too much, I take the lower dose, and I can't take it at the same time as another medication I need for atrial fibrillation, I have to have a gap of 2 hours or it sends the blood level to much higher than it should be, which is a bit of a pain but that is all. I was lucky in that it is a hobby for our head of the hospital lab and he and I did some experimentation with doses and timing. However, prior to that I was on a form of warfarin for a few years and it was also OK because you adjust the dose if required on a regular basis.
As you know - that isn't true about the normal range markers and I'm pretty sure it is more common than they think. But what do we know - we are just patients. You DO have symptoms that COULD be GCA, but not necessarily. They COULD be due to something else and it is up to your doctor to investigate and rule out any other possibilites.
I assume you have a mental health team? Or does your GP manage your anxiety? Get hold of whoever it is and talk to them about it all. It really isn't half as bad as you are imagining but I also know me saying that probably isn't a great help to you in the state you are in.
Just one thing I must say though: should you have ANY visual symptoms or jaw pain when chewing you need to get medical advice immediately - that means A&E if it is the evening or weekend.
Thank you all so much for replying.i can't help it and my g.p just prescribed Mirtazapine..I can't take it due to palpitations and don't want to take SSRI as my daughter was so I'll trying to come off this.i was anxious before all this R.A. GCA started but now I just can't see a way out.i am so sad and frightened by this disease and can imagine how bad the side effects will be.i was just about hanging in there and now I just can't function..I can't think about anything else and my anxiety is sky high.i have gone off subject here but need to talk to someone.Reading posts here I don't think I could cope with side effects and disease that will never go away.Is this normal to be so afraid of all this terrible disease.xx
First of all you must get your head around the fact it DOES go away for almost everyone. I have so many friends I made through the forum who I have lost contact with because they recovered and went off to live a normal life. There are some former GCA patients who are still here to provide help for others - proof it does go away.
Maybe the forum in general isn't for you- instead of reading everything, just ask specific questions relating to you for a while until you are more confident. You have to remember that there are more than 2000 active members at any one time so there are bound to be some people having a harder time than others and they then tend to stand out.
I think you need to sit down with the GP and work out if there is an alternative initially for your anxiety problems besides the medications you are so scared of. In the case of pred there are 80+ listed side effects - no-one gets them all, many of us have next to none. They go on about weight gain, depression, mood changes and a few others that I promise you I suffered in the 5 years I had untreated PMR! There was no pred in sight. The inactivity that is associated with unmanaged PMR becomes a risk factor for obesity, osteoporosis, depression, diabetes and high blood pressure - it's not just pred that can cause them.
I developed a DVT while on steroids for PMR (I think I may have had GCA at the time which hadn’t been diagnosed yet but was 4 months later). So took both Apixaban and Prednisone, both low and high dose) for 6 months and was fine. You do have to be extra careful trying not to injure yourself and with bleeding.
I never knew I could not take anti coagulants with steroids. I happily took rivaroxaban with pred and no one ever mentioned a problem. Unfortunately we can’t expect to never have any illnesses and of course some illnesses are worse than others. Steroids are a wonder drug and really sort out PMR and GCA very effectively. There are some much worse illnesses with which we could be landed.
Good morning. I'm sorry to hear about your problems and hopefully the answers you have had will help to reassure you. I haven't had GCA, it may or may not happen, and I have only had PMR since June last year, well diagnosed then probably had for quite a while before. It maybe early days but I've been on Pred for what, 10 months, started on 30mg and so far I have had none of the symptoms/side effects that others have to cope with and it gave me my life back. I may be very lucky and/or unusual but it may also be, is highly likely, that there are many others with our disease/s who are also in my position but because they have no problems don't make use of forums like this. As PMRPro said, in any online forum the comments and stories will tend to be from those users/members who are having side effects or other worries. That doesn't mean that everyone has problems. I think this is a fantastic forum and I have learnt and still learning, a huge amount. All medication has possible side effects and you may suffer from some of them or equally none of them. The balance you have to make, is does the good outweigh any of the side effects you actually suffer from.
Hi Lapainting I too have GCA, I was started on steroids and clopidogrel (blood thinner) straight away, unfortunately I bruised at the slightest touch, at one point I was covered in bruises and severe cuts on my legs, when I pleaded with the rheumatologist to come off them he said no I MUST take them?
So it makes me wonder who’s right and who’s wrong.
Clopidogrel is no longer recommended for GCA in the most recent guidelines as the bleeding risk in combination with pred was too high and not worth it.
Hi Well I don't know why my rheumatologist has prescribed it. I quite agree that it causes too much bleeding, my poor legs are now covered in scars from where I've accidentally knocked them, in fact so much so I've taken it upon myself not to take them every day and just take them now and again.
I am allergic to aspirin and all anti imflamation drugs so maybe that's why.
There used to be a theory that using platelet inhibitors (aspirin and clopidogrel are examples) reduced the risk of stroke with GCA. Another of the "just in case" drugs. Now they've decided it isn't as good an idea as they thought.
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