I told my Dr. yesterday that every bone in my body hurts, including my feet and my hands plus I have an ongoing headache that I am getting weary of.
I was told not to give myself the next two shots and see if things clear up. I know she is trying to figure out if my complaints are from actemera or not.
The body aches I have are every bit as bad as the PMR. SIGH
I don't usually have trouble with my feet or my hands. Now I can barely walk my feet hurt so bad. As much as I wanted the Actemera to work I just can't keep going this way. Sigh ):
Anyone else suffer in this manner?
Thanks
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Linny3
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I am struggling too. Having dropped the diabetes med. Metformin to understand my symptoms better. I sadly feel really flu like and exhausted, no energy or enthusiasm. I am afraid Prednisalone at its worst was not this awful. I want to sleep all the time and battle with low mood. I was so determined to make this alternative to steroids work. I am due to administer my 7th Tocilizumab,injection on Friday. I have sinus symptoms, breathlessness at the least exertion and a persistent nasal infection, that bleeds and crusts, sore throat, ulcerated mouth. Swollen aching eyelids that water copiously. The plus has been reducing easily from 40 mgs of Pred but beginning to be stuck at 9 mgs after two months. I need words of encouragement to persist. Am I achieving anything by putting up with this?
I am deeply sad to read your post and the depth of suffering that you are clearly going through,especially so when I look back at the support that you have given me and many others.
Your list of ailments would bring most people down,even the strongest but in the short time I have known you I have no doubt that you do have that inner strength.Only you know if your present route to achieving a given end is either working or not,worth it or not and with your vast experience of suffering you have the full tool kit to decide .............. yet again.
I'm not in the same category as you just now but I have just taken my third dose of methotrexate and it is giving me hell for a number of reasons, so again much like you I have decisions to make but how nice it would be if we had someone to make them for us. Fact is we don't,so come on girl pile up all of those horrible nasty side effects and then look at what they actually represent,progress or not ? What are the alternatives ? I mean real alternatives and not what would be ideal or nice in this instance. Would it be possible to return to where you were for example and give yourself a bit of time to refresh ?
Whatever you do I and lots of others will be cheering you on,feeling sad that we cannot do much more. I wish you every bit of good will,take care and keep fighting. xx
I think that is as much the fatigue as you struggle to do what must be done and can only dream of what you would LIKE to do - I'm restricted in some things while on just pred but it doesn't stop me totally. And I don't feel cr*p while just sitting there!
I am so sorry to hear that!!!!! We can’t allow the “ cure” to worse than the disease, and it sure sounds like that may be the case for you with this. I think you were the first to reply to my very first post and offered such encouragement. I wish I could offer as much to you but alas I’m very new to all this. In fact last night I just started my first dose of methotrexate. So far so good. ( but it’s only one dose... so many more to come). Just know that I am sending hugs and healing vibes across the ocean and I hope things turn around for you very very soon.
Thank you Richnroo that does help. The trouble with Ro-Actemra is that it is still an unknown quantity to patients and doctors alike ( to a certain extent). However much we want it to be the complete answer. Good luck with the Methotrexate. We are all so different.
Oh Jane....your symptoms sound truly awful and overwhelming. Not sure how you even manage. Low mood makes sense when hope doesn’t transition into reality. You are listening to your body and able to clearly identify all the woes, now perhaps it is decision time. And that problematic dose of 9mg of pred....it has stopped some of us in our tracks. The reduction from 40 down to 9mg is quite an achievement, however now you must examine if the current problems are worth putting up with or if a dose of 9mg (or 10 for that matter) is something you can live with. I know you had gotten even lower previously which was a journey itself.
Bottom line I feel for you and hope you get some relief SOON! You are one of the most supportive and compassionate members of this forum and deserve some hugs being sent your way. Take good care and keep us updated.
Thank you so much. It is the appearance of GCA that drives me on and the tantalising prospect of zapping it once and for all. My Rheumatologist will encourage me to decide for myself, I know. Your kind words are important.
The people who have reported no side effects sure are lucky. I am finding this just too nasty to continue. If I was able to reduce my pred. as you are doing, I might continue to fight the side effects. However, does anyone know what happens after the year is up and we are off of the actemera? I sure would hate to go thru all of this only to end up where I began, at
15mg of pred.
If you can manage the side effects and are decreasing the pred. maybe it is worth it to stick it out a while longer.
That is exactly what I have been thinking. Persistent little infections taking hold are hardly the end of the world. I am fairly sure that the fatigue and low mood are in part, caused by coming off Pred so quickly. I actually have very little pain. I would be more conflicted, suffering your all over pain. That was like me with untreated PMR, very physically disabled. So far, my experience of non temporal GCA has not been as bad, symptom -wise. It might have caused havoc in my arteries though. Do you have active PMR and GCA?
Thanks for your wisdom in the midst of all your pain!
So true your support to me and so any others as been so wonderful. Can't put words for support like you do but know that you are very much appreciated. Also, hope a tx will be found for you. GCA, PMR and all that goes with it is a very long road with difficult twists and turns for sure. Hang in there Jane. There are many willing to walk this journey with you.
Oh Jane l’m just so sorry to read this 😢 it sounds awful & you had such high hopes for it 🙏🏼
Your Pred reduction is amazing but l’m sure the balance is very fine between benefit & side effects; do you know if they are likely to improve or persist?
You kind of forget what you used to know ( like slow, tiny tapers) thinking that you are in a whole new world because of a new drug..I felt so held by the forum managing PMR. The trouble is, next steps will be up to me. Largely because nobody really knows.
How are you doing? I often find myself thinking about you? 💖
So sorry Jane, I expect I am like you now once was....hoping a sparer would solve the problems.....struggling at 9.5, feeling so ill, was pinning my hopes on an alternative......the low mood is taking me over too....my birthday this week, and family want a meal all out together this weeknd...do I want to, and have the energy...no, but suppose I must find it somehow....this is what gets to me the most.....
Your words do encourage Longtimer. Have a happy, happy birthday amongst those who love you and want you. Even if you fall asleep in the starter.🌹🎈
My husband and son were off on a hike in the Peak District and at the last minute I said “ can I come, just for a run in the car”?. My son immediately dropped out. Who wants a slow, moany person holding everyone back? Upshot was everyone flounced off and husband stomped off alone, trying to enjoy his damp squib of a staycation.
Oh dear......this all makes us feel worse doesn't it..had words with OH yesterday, he has always hated me going on Pred, he quotes a Rheumie from 8 years ago... "This is a nasty drug, we will have you off it in 2 years"......he says, you are ill on it, so why take it!...grrrrr.....sometimes I think he is right....but I don't tell him that!!..
Thank you, will try to make the best of the weekend, going from chair to chair!...
Jane so very sorry to hear this. You've had a tremendous struggle throughout PMR and GCA. The pros and cons of medication is such a worry so no surprise your mood is low having to cope with all the pain. I know that you'll be discussing this with Sarah and she'll help with your decision. Hang on in there, we know you can do it girl.
Oh Sheffield Jane I am so sorry to hear what you are going thru. Might you be able to do the injections every ten days instead of once a week? Maybe three injections instead of four a month might give you some relief.
Just had to send a hug. 🤗. Decisions about how long to tolerate physical problems from meds are sooo difficult. The “ what if I wait a little longer”? I too am at that point. Sorry I can’t help in your dilemma, but I hear you fully. My best.
I am so sorry to hear about everyone‘s struggles with medications.
It is exhausting to figure out if it’s the condition, or the medications that are making us feel so lousy at times, with the risks, contraindications, side effects, relapses, flares, et all... Medical management is Tough.
Interestingly enough when my journey began, the vascular medicine specialist that I see in NYC told me that I should consider a benzodiazepine or some sort of anxiety medication to handle what was to come... I didn’t get it at first, but seven toxic medications added to the list later...I get it 😔
This trip been is not for the weak !
So yeah, like many here on this valuable site, it’s hard to come to terms that I have a condition or disease when I was truly a very strong and healthy 58 year old, and to this day Team Docs USA say I am one of the more perplexing patients because I do not present, I present asymptomatic, but yet my body is flooded with inflammation from an unknown cause
And it sure has been one lonely ride, right ? Friends don’t understand, family doesn’t understand, we are constantly in self isolation, minds racing, we can’t do what we used to do ( or as well or for the time being) and enjoy ...Let’s consider ourselves pioneers with all these new uncharted miracle medications !
But yet, I consider myself one of the lucky ones when I read these heartbreaking yet heart lifting threads.
I was diagnosed with LVV, severe right renal stenosis, Hashimoto’s, all in November 2019 and I’ve been taking weekly injections of Actemra since January 2020, while tapering prednisone sine June 2019, I am currently at 1 mg of prednisone and according to my labs, some mild symptons, my adrenals are coping well to the withdrawal
As I know we’ve all schooled ourselves on the medications we are on, you know the ACT put’s us at higher risk for infections. So while reading this, and I’m no doctor of course, I’m wondering, as you describe your symptoms, if maybe you are carrying some sort of infection, from a UTI to sinus infection to Flu...no i’m not taking Covid, but that doesn’t help with our anxiety now does it ? But yes, from Actemra
And more importantly, how disappointing it is because you had such hope for it to work for you
This is when the doctors get kind of pricky too ,when you try to tell then how you’re feeling , The thing is (as I found in the beginning anyway) it’s because they don’t have an answer themselves, and that frustrates them too
Now that they admit that with me (I appreciate their candor) and I tell them I’m not here to test you, but to share... so that you can either ask the same questions to other patients... Or you’ve heard the very same thing from other patients, so that we can all understand it’s the medication doing this to us...or that it will subside, and it will pass, and if not, we will change to another dosage, or to different medication entirely
Because We know We do not all respond nor tolerate medications the same way.
So we are merely looking for reassurance that we’re not getting worse or going crazy !
They sincerely do want to help us, yet they shrug, as if to say well what is the alternative ?
For example, My labs have shown low WBC‘s for the last few months, that my Rheum told me to do biweekly injections, and if it doesn’t change, we’ll go monthly Injections
Even with this reduction, they still remain Neutropenia low, that Docs may just finish off the course of a year now. They will continue to monitor me monthly by way of labs, as if I were still on it...and things if markers show disease activity again, then we might consider the dreaded methotrexate next 😔 Praying we won’t have to go there
Good news, while we know CRP and ESR markers don’t tell us where, or what level of inflammation is, I’ve had (1) CT scan and (1) MRI show there has been a 90% reduction of the imflammation !!! so we do know that it is doing its job, and relatively quicker, sooner than we had thought !!!
So some things I have noticed, I feel like I’m about to come down with something every time after I have had injection for a few days, raised BP, and then I just suffer from as you said, low energy and low enthusiasm for while Whether it was weekly, biweekly, and soon to be possibly monthly until the end of the year
Do you also have a cardiologist in your care, you mentioned your arteries because on a former post I mentioned I had an aortic dissection while on this drug. However no doctor seems to think ACT was the cause, they believed it was the silent inflammation of the Aorta) I am not trying to alarm any of you, the good news it was a type B descending A.D. (least dangerous kind) but it was painful and frightening AF and put me in the ICU for a night during high stakes Covid time. But more importantly, no Cardiothoracic surgery required
But yes, having large vessel vasculitis, GCA, can put us at risk for these kind of events, not the Actemra
An aside, there have been reports of heart attacks on ACT, but I’m sure you have heard that, as well someone even mentioned this happened to him on this site.
So back to having a cardiologist on your team...
Are you watching your blood pressure, ACT can raise your Blood Pressure. As well as raise your cholesterol (check ! and it did quickly, hello statins) mess with your liver, and leave us all at higher risk for infection lowering our WBC ‘s...which gets me thinking when I hear about how many people feel lousy on it...
We have a toll-free 24 hour ACT pharmacist here in the States.
Do you all have a number to call with questions, when you feel ill, and to give you some guidance? They have offered more valuable and reassuring info on what to expect than my Rheumatologist at times, regardless how much I love her and her care.
PS I am most grateful that I am not in any pain, and I’ve been keeping up with my wine inventory quite nicely without any consequence.
My favorite thing about reading about everybody’s woes, despite it all, how caring and spirited and encouraging and knowledgeable so many are... they still know how to enjoy themselves from time time with their ahem, nightcaps if you will, so naughty and humorous...and all so very, human
Virtual hugs of healing thoughts for better days, with love and prayers to all 😘
Jane , sending you huge hugs. So sorry you are having a low time. You are such a comfort to so many on here, always saying the right things. I hope things begin to change for you soon xx❤️
I am so sorry to read this. I have had to miss 2 injections because my white cell count fell way below normal. It has risen after 2 weeks, so I'm waiting for a call to hear if I can resume Actemra - if so, for how long and what next?
I seemed to be one of the fortunate ones, suffering no noticeable side-effects after more than 20 doses and down to 3mg pred.
My heart goes out to you,i had terrible problems with Methotrexate which has left me with terrible tummy problems.Have been on Actemra for over a year had problems first few months,now i get bad headache after taking it,when Lockdown started here in Scotland i got a delivery of Actemra and had to learn to give it by myself,no support at all not had bloods done in nearly 6 mths.I hope things get better for you real soon,sending virtual hugs.xc
Are you taking Statins ? Actemra is know to raise cholesterol, (which you should be monitored for) therefore doctors tend to add that to the regimen Statins are known to cause muscle pain and discomfort for people. I am on the highest dose of a statin, and my feet are achy every morning. Never had that before. Good news, it passes fairly quickly for me. But yes, it was alarming at first, now I’m used to it. Wondering the longer I’m on Act and Statin if there will be more aches and pains to come. But I understand now why people hate them.
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Actemera side effects??
Sorry did not get back sooner
GCA Sufferers Please be BMA (Be More Aware - than me!)
