The current med regime and making me feel far worse than the original GCA!
Last week was my 50th birthday and I had diarrhea for the day.
This week, I have had diarrhea, extreme tiredness, irritablilty, this week I have managed to avoid feeling sick, and as for the brain fog and clumsiness,,,,,, arrrggghhh!!!
And trying to work out what is meds/GCA related and what is menopause, and what may also be mental health related!!!
My rheumy nurse is normally really good but has been unavailable.
It doesn't help that I am my husbands carer and he is having a particularly bad time with his health too, so between the two if us life is tricky!
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Louiseiw
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What dose are you on with prednisone? How were you asked to taper your prednisone? Methotrexate works for some but not for others. Sounds like you tapered too quickly.Those with GCA will be even more helpful with your situation.
This is a challenge to get it right and manage it well. Hang in there help is on its way!
As well as prednisone and methotrexate, I am curretnly taking folic acid once a week and Alendronic Acid, and Theical D3.I am also taking antidepressants, sleeping tablets, bp meds and HRT!
They are all the same. I have only been taking the Methotrexate etc for 5 weeks so it is all new to my body still! I am sure it will improve I am just feeling sorry for myself!
You might find you feel better if you increase the folic acid - you can take up to 5mg 6 days a week. Part of the reason for the folic acid is to reduce the nausea that MTX can cause and nly once a week is often not enough.
That is a precipitous rate of reduction - it might work if you were taking Actemra but MTX isn't proven to make that sort of reduction possible, especially in GCA and certainly not after only 5 weeks, it takes up to 3 or 4 months to start to have an effect. 10mg a month is a LOT.
Have you had a dexascan? Do you REALLY need the bisphosphonate (alendronic acid) - it can contribute to nausea and gut problems.
And you need to ask a pharmacist to check your medications for interactions. I just never understand why they want to start so many drugs all at once - there is no need for it and by starting from basics you can better identify what is causing the problem.
You need a really good discussion with a doctor - asap.
I havent reduced the pred since I started the methotrexate. That wont happen until the methotrexate is at the approppriate level. I think the reason for starting the new meds so soon was that even though I have been on the steroids the inflamation markers in the blood test were still the same in March than they were in November
Which really says that either it may not be "just" GCA - there are other things that can cause similar symptoms - did you have a biopsy or ultrasound that was positive for GCA? Or they didn;t actually have you on enough pred. Sometimes it DOES take more than 60mg
Are you suggesting that I don't give support? The reply I gave was actually suggesting reasons WHY she felt so bad and how it might be made better. That IS the point of this forum - to provide remedies for the bad experience and save feeling so bad you get to the meltdown stage.
My apologies, I didn’t see your first reply. I’m going through the same thing emotionally and recognised it straight away and my heart broke for Louise.
Apology accepted - but in case you don't know me, I assure you I never reply with advice until I have read everything relevant - I read every reply in the thread again if I think it is necessary and my notifications are for everything in a thread. Even the "Thank you" replies which I still look at incase there were replies before them that weren't notified, in the internal threads HU notifies in chunks, not individual replies.
I was diagnosed at the beginning of November and went straight onto 60mg which sorted out the symptoms of GCA straight away, At the begining of January I started reducing by 5mg every 2 weeks which went well until I reached 25mg and the symptoms returned and after a couple of times it was decided to go on to the Methotrexate etc. I am aware that is all side effects and may settle down, I am just feeling unwell and rubbish, hopefully when I catch up with the nurse she will be able to suggest solutions. And my husband lives with so much more,
If you have stuttered at 25mg a couple of times, then that’s telling me that is below what your GCA needs at the moment.
Am I reading correctly that you were on 60mg for November and December - if so then that’s sounds very sensible, and everything was okay with the 5mg step downs until you reached 25mg?
What dose did you go back to when you flared, and how long did you stay there? I would say not high enough nor long enough if you flared again.
You are not reducing come what may, you are trying to find the lowest dose that gives same relief as the 60mg did…the problem is once you start flaring each successive one becomes harder to get back under control.
Personally (having had GCA) I would say you probably need 30mg or 35mg at this moment to get things back under control….then reduce less frequently - 3-4 weeks, not every 2….and do without the MTX.
You are only 6 months into GCA, and flaring is quite common within that timescale particularly if you are reducing too quickly…
The Rheumy team probably won’t agree, but they haven’t lived with it!
This is great advice re your steroid reduction, when I first presented with vasculitis I too was put on 60mgs and it took a long time to find a balance. Go slowly stay at 25mgs until you see your rheum ps I got down to 10mgs!
Louise, I want you to know that I completely understand what you’re going through. The menopause and life threatening illness is mind blowing but looking after someone else whose sick is just an awful lot. God bless you love xxxx I’m the same but without the carer
Others have already provided lots of sound insight. With all that’s going on with you physically on-boarding new medications with new symptoms, mentally adjusting to a new diagnosis, and the responsibility of caring for your husband, it’s no wonder that it’s taking a toll on you! No need to feel guilty for complaining about your woes, or to dismiss your mood (or compare yourself to others worse off). You feel how you feel, physically and emotionally. That would make even the strongest of us “crack”.
I’m new to adding MTX to my regime as of January this year, after two years of being stuck at 9mg. Every time I tried to lower my dose by even .5mg (even using a slow 5-week taper), I would flare. I was hesitant to start MTX for my PMR as I had heard of folks who had terrible side effects (fatigue, brain fog, nausea, diarrhea, liver issues, or development of cough). I wonder if MTX is contributing to some of your current problems. May I ask do you take it orally or do you inject? I inject and have had no side effects (that I know of), thus far.
I had diarrhea for a period of months (prior to starting MTX), and figured out I was taking too much of the wrong kind of magnesium. Once I changed the varietal and dose, it went away. Sometimes it’s a process of elimination, and because you have a list of medications and supplements, it may take time to sort out. The timing of newly emerging symptoms compared to the timing of on-boarding new medications/supplements may also provide clues.
Please do advocate for your health in a world where many medical professionals want us off pred ASAP (not without good reason given impacts of long-term use). However they do not live with our symptoms and the re-emergence of symptoms when we taper too fast. Quality of life is important too.
I hope you can figure out what is causing the the diarrhea and it settles. As far a mood, menopause and steroids, remember that high doses of pred can definitely cause a change in mood (for me it was like dysregulated emotions) and sweats. I was 55 when diagnosed and in menopausal territory, but I found with lowering my pred dose my mood improved and the sweating was limited to early mornings before my next pred dose kicked in.
Know that you are not alone…we are here for you and we “get it”. You are adjusting to a new chronic illness and that will take time to accept. Most go through a range of emotions like anger, confusion, sadness as we mourn the loss of the life we had before our AI condition. Adjustments can be made to make life liveable, albeit different. Focus on what you can control (diet, activity, rest, where and what type of support we access), instead of things you can’t control (why you got it, level of disease activity, when/if it will go into remission). Be kind and patient with yourself!
Thank you! I think the biggest thing for me is having to learn to rest, although I care for my husband I have a very active role in the church etc and forcing myself to rest is difficult, thankfully my minister - I am the secretary and children's worker and part of the leadership - is very good at insisting I take time off etc. Tomorrow is a prime example, for the morning service, we get there anytime between 9 and 9:30 - depends on the queue at Mac Donalds drive through for the breakfasr as we drice - hubby goes upstairs to organise the tech/live streaiming and sound system up ready for the meeting, I stay downstairs to set up and organise everything I need for children church, the I make my way upstairs to join the rest of the worship group for a quick run through of the songs for the morning, sevice starts at 10:3o, the children and I stay in the first half of the meeting, and I am part of the worship group, then downstairs for children church and back for up for the last song!
Hmm - having done all that in the past, I fear you may have to reassess and learn to accept help and delegate. That would have had me in bed for a couple of days with PMR in my early 50s, if I'd managed to get home in the first place! The illness is ongoing - pred only manages the symptoms and you have a serious autoimmune illness. And driving yourself will never allow your body time to heal. It is your temple - it must be cared for and maintained.
Interesting, I was also a church secretary for 10 years and am aware of the demands in a largely volunteer-driven organization. Often I was asked to “fill in” for everything from greeter to Messenger leader especially when others couldn’t. I was not, however, 50 with a chronic illness.
In the early months I really had to learn to re-assess my activities and balance out my rest (mental, physical, sleep), and my lifestyle/activities (social, physical, emotional). Pred gave me such relief and energy after 6 months of pre-diagnosis pain, that I hopped right in with renovations of our newly purchased retirement house. I spent a day stripping wallpaper. WRONG!! I suffered later that night and the next day. I’ve learned pacing is the key. So is keeping stress to a minimum as it negatively impacts our conditions so much.
If you try and live your life as you did pre-diagnosis, I fear you will suffer the consequences, which in turn will add to the growing list of frustrations. Listening to your body will help. Sometimes we never figure out what causes what symptom (or what causes a flare)….could be doing too much physical activity developing DOMS (delayed onset muscle soreness), inflammation from not enough pred (pred withdrawal or taking too small of a dose for the inflammation levels), medication side effects, stress, all of the above.
The best we can do is help our bodies and minds via optimal health to be capable to cope with all the challenges. Rest is certainly a key component. Saying “no” may be difficult, but so will the resulting fallout from not doing so. Prioritizing your health is not selfish, and I’m glad to hear your minister is modelling best practices. As PMRPro said, accepting help and delegating are important to learn. You’ve already identified it as an “area requiring growth” (as they would say in the social work field). Figure out what is a priority and go from there.
Indeed the role of church secretary certainly seems to have elastic boundaries. In my working life before I needed to care for my husband I was working with children with life threatening and life limiting illnesses so had unlimited energy. But as you all.say that was then this is now and I need to remember I have a chronic illness.
Thank you everyone for your comments today they have really helped.
Just listening to your day at the church makes me feel exhausted! Learning to pace and rest has been one of the hardest lessons I've learned during 8 years with PMR and I still blow it at times and have to rest anywhere from 1 to three or more days. Mind you I'm 73 so there are a few other age related aches and pains in the mix.
Other than the devil's tictac, as prenisone has recently been dubbed, BP meds and a few supplements to maintain healthy bones there are no other ongoing meds in my medicine cabinet.
From the very beginning the doctor then and others I've seen over the years have pushed bone meds, antidepressants, sleeping, pills and MTX. I know many people really need and require one or all of these, however, adding more drugs with their own side effects, often directly overlapping with those of Prednisone, we're not something I would entertain after researching each of them when offered.
In the last few years I've been diagnosed with Celiac disease, which is under control with a gluten free diet, and microscopic colitis. I was initially given medication for the colitis which was another type of steroid. It worked but the side effects we're terrible, the last one I suffered being daily migraines. Lucky the colitis symptoms are not that severe so I'm back to living with them quite happily.
I don't know if this experience helps in any way, however, the demands placed on your time can't possibly hold much rest tme or me time for you. Hopefully, you can begin fitting more of these into your schedule soon.
I think I am slowly understanding what this illness is. I just need to accept it. It will come eventually. I won't be fit for anything on Monday I gave taken Mondays as a people free day for a while I am beginning to.understand why now
Sorry to hear that you had a meltdown. I can sympathise with you as l had the same thing two weeks ago. I felt like l had totally lost the plot. I don't go in for tears ever but couldn't stop on this occasion. I did feel better afterwards.
I had been struggling with stomach issues and many side effects for a while and it had got me down. I had had an endoscopy, a biopsy and a CT scan plus a pretty powerful course of antivirals for quite a long time. My pred is now down to 12.5 and l feel better. I think due partially to reassessing things.
When l was first diagnosed with GCA two years ago l was very kind to myself and rested every afternoon and made it clear to family and friends that l couldn't participate in life at the same level as before. I have gone back to that and rest nearly every day in the afternoon for at least an hour.
Your Sunday regime sounds very quite full on and stressful. I think the early start alone would have me in bed for two days. Sleep and rest seems to keep me in a reasonably good mental place and if l do anything like gardening or sewing l have a little timer that l set for half an hour to remind me to assess if l am getting a wee bit to involved and need to stop or slow down.
I have found that I have to watch out for the times when l feel ok and then do to much. The GCA then catches up with me and l am flattened for anything up to a week. It is hard to accept the illness and that life will never be quite the same. No more tearing around on horses for me. Good luck to you.
l think the the steroids are a good culprit for the mental health issues. I am now 67 but in my mid fifties l did struggle with the brain fog etc etc that comes with the menopause. Has your doctor prescribed HRT? mine wouldn't. I hope you feel a bit brighter soon.
Thank you for your encouragement. The mental health issues are ongoing for 20 odd years. Yes I do the same feel better for a while then overdo. And I always feel guilty for resting in the daytime! I think some of it is getting my head around having a chronic illness apart from mental health I am a fairly hath active 50year old.so ot has been quite a life change
Have been reading this thread, and want to sympathise/empathise with you. You are 20 years younger than I, but I identify with the attitude that one puts the illness on the back burner and tries to continue as normal, with this added “nuisance” in the background…but, as wise people on here say repeatedly, we need to rethink and reset the way we live our lives… mainly to include rest ( hopeless at it) and stop insisting we’re as we were. I’m just having to increase from 5 to 10mgs as bloods are up, vision blurring again, jaw claudication for the first time, etc etc…rheumy says I have to increase until I’m “symptom free”. I’ve never been symptom free since this started, because of what Pred creates. So round we go. I wish you well and hope you get things to settle. We’re so lucky for the shared wisdom here. x
I have learned to say "No" when it comes to Church duties! Now I only lead the worship once a month and have taken myself off other rosters. Churches are notorious for "loading the willing horse". I am sure you love doing all you do and all your work would be much appreciated but you really must step back and put yourself and your health first. Stress and being overly busy are not good PMR partners.
Exactly that! Espicialy around childrens work it's a passion and very much my happy place. But I can't give out if I don't look after myself. So we aren't running a half term holiday club. Instead if I am having a good day I will.suggest a meet up at the park or something It's also trusting others to take on some of my jobs and allowing them to do it. I started the children's work 6 years ago then had 2 years of lockdown. There are people available!!! Thus far I have avoided leading worship as such I sing and sign on a Sunday but don't chose songs etc.
While the GI symptoms can certainly be side effects of medication, they can also be a sign of something else entirely. If it continues it’s worth some more testing. Mine started about six months after my PMR dx and turned out to be celiac and colitis.
I feel for you and I don't respond because I wish to share joint misery but hope. I spent four days in the Derbyshire Dales, one camping, God terrible windy night in a rubbish tent I dumped. But once I got the pain under control and got my way through it the proverbial Sky cleared and I could get some life back. It is tough, the professionals want you on almost ridiculously low meds, in my case Prednisolone because it harms you long term but what does long term without life quality mean? I have tried three times to reduce it, with an overlap of Hydrocortisone which is apparently less damaging and then the Osteoradionecrosis kicks in my jaw at 8mg and I have to up the Steroids to wrestle it back down again and as I have told my Rheumatologist/Ophthalmologist Paracetamol does not cut it, I am in agony left to them so find your way.
Mine too. Vasculitis then crohns. So be sure they put two and two together. Your rheumatologist should be your starting point when you’re ready for it, steroids also mask SOME of the obvious symptoms and make it hard for docs to dx but keep pushing. Good luck xxxxx
Thank you so much for all your suggestions, help and support. It was lovely to share with people who understand. I spoke to the Rheumatology nurse on Monday, Having had more diorrhea and breathlessness over the weekend. She has suggested I go on to the injection to avoid my digestive system - part of the difficulty is that I am already on lots of other meds that can cause similar gastric difficulties. However I have an appt for 17th June which although is a month away I am happy to wait, and in the meantime go to monthly blood tests. It was just good to talk to her and know that what I am experiencing is normal.
Your comments though about making sure I get enough rest and not overdoing it though were really helpful and has made me think about what I do and how I can adjust the things I do. Fridays I run my church toddler group and I have already explained how crazy Sundays are, so yesterday I literally stayed in bed until 2pm, I will keep you updated, but thank you again for all your support
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