I was diagnosed with GCA (Temporal Arteritis) in February 2017 and have been on a see-saw of medications ever since. I have a wonderfully supportive GP and see a rheumatology consultant regularly, every few months. I was started initially on 60 mgs prednisolone by the hospital and then the doses have been regulated depending on my blood results. Twice after reducing at 5mgs a month I got down to 30mgs and then 20mgs but as blood results were abnormal the doses had to be increased again each time. About 18 months ago I was diagnosed with steroid induced diabetes. To cut a long story short, this last August I had got down to 1mg of prednisolone and was hoping to come off it altogether in the next four weeks. I had been reducing at 5mg a month until I reached 10mgs and then by 1mg a month. However my bloods were not good in August and I had not felt well since reducing below 3mgs and my GP put up the pred. to 10mgs again. I have now seen a geriatrician consultant as I have several health issues which have developed, numb and tingling lower legs and feet, severe water retention related problems, painful shoulders and burning pain along a nerve that runs parallel to my spine. I have now been diagnosed with polymyalgia, diabetic related neuropathy, shingles related neuropathy in addition to the GCA. My rheumatologist wanted me to start methotrexate but my mother and sister did not do well on it, they both had autoimmune diseases and methotrexate significantly reduced their quality of life until they died my mother at 79 and my sister at 63, I am 74, so I have held off for the moment. I have been started on pregabalin three times a day at at first it seemed to stop/control most of the pain and allowed me to sleep for more than the 2 to 3 hours I had been getting each night, however, three weeks in and the pain is not as well controlled and I am beginning to think this nightmare of pain is never going to end. I have muscle cramps that last for hours and often have me in tears and the headache has never really gone in 2 years 8 months. Now I have so many pains and health issues I am struggling to stay positive. I have been referred to a pain clinic and am awaiting an appointment. I am sorry to be so long winded but so much is being affected by pain. Yesterday was my 52nd wedding anniversary and I really was unable to enjoy it as I was in a lot of pain. The pregabalin masks the pain but affects my functioning making me feel slow witted and with a lack of concentration etc. Upping the dose is not really an option that I want to consider. The long term use of high dose steroids has damaged the cochleas in both ears and I now wear two hearing aids and I have been told that the damage is permanent. I no longer feel like me and am fearful of what is going to happen next as it really has been one thing after another. Please any helpful advice as I am struggling to cope with it all. I am currently taking 7mgs prednisolone, pregabalin 3x a day, metformin, omeprazole, furosemide, bisoprolol, calcium and vitamin D. Thank you.
I haven't posted for a long time but feel desperate. - PMRGCAuk
I haven't posted for a long time but feel desperate.
Oh mavisEllen you are in a pickle. That's a lot of pain to manage. I have typed diabetes impacted by steroids so I am on insulin now. I have neuropathy in both lower legs and feet. So I do empathise. I think the pain clinic is a really good step forwards. I found them really helpful.
There are a range of meds that can treat nerve pain ....it may be you need to change it to another. I am afraid you do have to experiment with the available meds until you find a dose and kinds of med that helps you. Sometimes the reason it doesn't work as well is because you need a higher dose or perhaps you can play with the timings. I take 60mg of duloxetine for neuropathy. Like you I found it worked well in the first few weeks then it's effectiveness flattened out a bit. I did try another 60mg but it didn't help much more, but I didn't have increased side effects either.
How is your abh1c at the moment? Are you on meds or just diet control? It could have been the GCA that effected your ears too.
I know there's a lot more in your post and others will be along to address those. I just wanted to reply before I hop off to bed and sleep (🤞). I hope you know you aren't alone. You are bound to feel very wobbly with so many things hitting you. I hope a pain clinic appt comes through ASAP and they help you as much as I was helped. They had a psychologist attached to the one I went to and I had very useful sessions on living with pain, pacing, distraction techniques and pain management generally. I have linked a little site below just to provide info on the types of drug you can use for neuropathy My best wishes and I hope you feel a bit more like yourself soon.🌻💜
healthline.com/health/perip...
Thank you for your reply. I found it encouraging. When I was on high doses of prednisolone my hba1c was 56 when I was on 1mg in August it was 47 now I have been up to 10mg and now down to 7mgs I don't know until my next bloods which I will have tested a week before I next see my rheumatologist. I am taking 500mgs Metformin daily. I do use distraction a lot to help me cope with the pain but sometimes it all becomes too much! Thanks again for replying.
Yes on bad days it is hard. I am looking for proper seamless socks that don't irritate and hurt my feet. My last hba1c was 55 which is seen as good for me. The diabetes nurse said if you can keep it in the mid 40s to mids 50s whilst taking pred you are doing well. How are you getting on with Metformin? Some people find they get a funny tummy. That said you are on a low dose. I am surprised they haven't bumped it up to 500mg twice a day. Getting blood sugar as low as possible does reduce the pain if you can catch it in time. 🌻
I completely empathise with you , I have had desperate times like this over the years myself , especially when the Pain and tiredness adds to the build up of all the new symptoms and diagnosis.
You feel things alot more too when a significant event like an Anniversary happens and you can't celebrate in the way you would want to . You get those , " I didn't see myself being like this Blues". You aren't alone in that.
I hope I can help with some positives which at the moment I can read you really need to hear but might be finding it hard to see behind all the drugs and big names.
You have clearly got a stronger character than you believe at the moment , and are braver than you think, because you have already managed to get this far and kept fighting.
You should be proud of yourself for that , and I'm sure you Family are too , in fact it's that amazing personality of yours that probably is the reason that you have been married 52years. Remember this , it's hard at the moment , but you are tough , you can get past this.
In terms of Pregbalin , what dose are you on?
It is a positive thing that when you began it you have found it is a drug that is being successful for you in dealing with that Neuropathic Pain.
It does have side effects of drowsiness , some loss of concentration etc. but these can reduce as your body gets accustomed to the changes it needs to make , and you yourself learn extra pacing adaptions day to day , just like you did with GCA to make this feel easier.
It does sound like these side effects are putting you off slowly increasing your Pregbalin dose , as well as the feeling of being fed up of all the drugs , but an increase might help you.
Just as with Pred at the start of your treatment , it takes time to adjust to the medication , but you know that the benefits of reducing the Pain will help improve day to day life in time.
Some of the tiredness and lack of concentration will be caused by the Nerve Pain not being fully controlled yet too. I won't say you will definitely get less brain fog if your dose increases but you may cope with it more because you don't have to deal with the Fatigue caused by the Pain as well as the side effects.
You know how little life style changes have helped relieve some of the GCA issues .
When your drugs have started to improve things more you will feel you can make little changes in diet , do some gentle exercise ( very slow at first!) and day to day activity that will also start to make your Diabetes symptoms and all the Health issues a little easier to cope with. I'm sure your Family will help you with that too , and that Love they show by taking Care of you is more Powerful for building your Positivity up again than any drug.
You have a Pain Clinic appointment due which is another positive step in the right direction. They will be able to hear about your experience , both good and bad with your drugs , hear your symptoms , and will understand about your family history with Methotrexate. Write down what you want to tell them before hand and from your description they will be able to hopefully find a different alternative to Methotrexate to help with the GCA/ PMR pain and tailor the medication you are on for Neuropathy to a treatment plan that suits you. Things will be better and brighter after a little trial and error again. Just a little longer.
Thank you for being brave enough to reach out for help , we are all here reaching out our hands behind you to hold you up so you do not fall.
We are always hear to listen when you need a shoulder to cry on over the next few months of changes , so please, keep writing and sharing , you will find your way soon xx
Thank you for your response. I am determined not to give up. I am lucky enough to be able to continue activities with the help of my husband. I find keeping busy helps to distract my attention from the pain. I am on 25mg of pregabalin three times a day. I am looking forward to receiving the pain clinic appointment. I just do not like the 'brain fog' it is interfering a lot with my normal functioning. I am an amateur songwriter and run a songwriting group for the U3A, University of the 3rd age, and the pain/lack of sleep and the medication is adversely affecting my creativity although I have just about managed to keep writing. Thanks again for your support.
We have a lot in common , I am a land and Nature artist and have also done workshops for U3A. I was just getting back to my own professional career full time after Home Educating my girls and had some public commissions coming in when this all hit. The physical symptoms of GCA and POTS have meant I haven't been able to work and for a very long time I have been on enforced rest.
It did dent my creativity too .
Brain fog breaks the flow of concentration and the tiredness and Fatigue put me off doing anything creative for a while. I could not think , I couldn't work the way I wanted to , I didn't want to work.
When I came on Health Unlocked I was looking at so many new possible diagnosis and had already collected a fair few health problems ( both diagnosed and misdiagnosed)) over years already.
I eventually started chatting to people in the PMR/ GCAuk forum after reading the posts for about 6 months before , I spoke up.
It was actually the odd bit of humour , kind word , and the reassuring support on here that helped me get some creativity back .
I started writing the odd anecdote in replies , then writing posts about how I feel with , and about what I know about Chronic illness, but using a creative narrative I began to find my voice again.
I even picked up a pencil and started drawing the odd very , very basic cartoon to add to a post. I have even started trying to work again at Home in the smallest ways .
The diagnosis of everything has been taking for ever, but I just wrote a new post yesterday about how I have got one step closer , and my new drug may actually be the thing to help me get on my feet again and slowly build up my creativity.
I don't know if I will ever be walking 5 miles across fields with a bag of tools and and axe or building large art sculptures again , but I know I am going to get to do a lot more than I thought I would.
Partly because of three things Diagnosis , This Forum and Learning to sort of love the ,
" New Normal".
It's feels like a burden at first , you start getting diagnosis after diagnosis , pill after pill , how can I take more ?!! but actually not knowing what you have us the real curse.
In Chronic illness sufferers less is definitely not more .
At first you think its overwhelming fear of having things and having to cope that is making you feel terrible. Then it's all the drugs must be doing it.
In time , when you get all the diagnosis and medications sorted out , you realise it wasn't these that was making you Anxious and Frozen but it was living in that limbo of not knowing and not having all the facts and the medications to help you get control of your day.
In fact , it's the Negative Stress of having Uncontrolled symptoms and Physical Pain that cause half of the Mental Processing Symptoms and most of the Creative Block , even when you are on medications until the treatment has been worked out right.
When you start to get things right, and you can completely adjust and adapt , you can be "You" 100% again .
That's when the brain fog starts to step back even if you may have to pace the way you work , your mind gets used to its new working parameters , the body it's energy limitations, it will even begin add a new dimension to your creativity.
I know you will be thinking , but I've been having this for more than three years and the stuff is still coming . When will it ever stop and be sorted out.
Well , I am just now seeing the end of some diagnosis tunnels and I've been going a bit longer than you so I can tell you , you want to know it all , because when you do you can work it all out. It will be worth the wait , even if you find that in time you leave the pharmacy with a carrier instead of a tiny paper bag.
Feel free to PM me if you want to chat more, or pop over to my profile and read through any topics in my posts you might find helpful. You haven't stopped singing yet.
Little for me to add to the replies you've had from 2 people who have and are literally walking the walk.
All I can say is that it may NOT have been the pred that caused the ear problems - it could just as well have been the GCA itself, a recently published study has shown strong links between ears and GCA. You were allowed to flare a few times - that won't have helped. It could also have contributed to the neuropathy.
I do wish the medics would understand that there is a role for dietary advice for patients with GCA/PMR and who must take steroids. And that creeping down the dose from 20mg is a much better way to go about things as it helps avoid flares and yoyoing the dose as you have done, And that symptoms rule, don't wait for bloods to "go off". But it is what it is and we're working on it.
Sending you gentle hugs, and I do hope your "geriatric" team come up with the goods. "Specialist care of the elderly" sounds friendlier???
Thank you for replying. Today has been a bad one but I have, with the help of my long-suffering husband, managed to get out and continue my activities. However, he is now in bed and fast asleep and I am not even able to lie down as the muscle cramps are quite severe tonight and neuropathic pain and the headache are all contributing to my insomnia. It is almost as though I am too tired to sleep. I have taken all my medication but it just does not seem to be as effective as it used to be. Thanks again for listening.
It's exactly that you are "too tired to sleep" . It's not just the Pain stopping the sleep but extreme tiredness makes you " too tired" to get comfortable . Then the vicious circle of getting no sleep adds to the symptoms which in turn stop you going to sleep.
Until you get to your pain clinic appointment , even with your supportive husband you may still need to slow down a little longer and pace yourself even more. I know , you think you are already doing nothing in comparison to the past , but sometimes what was nothing in the " Old Normal " is still too much until you have the " New Normal " under control with treatment.
Choose to do little amounts of what you love not what you think you should be doing for a while because it will maintain your Mental Health , reduce the Stress of your situation and that will help make relaxing enough to get some sleep easier.
Don't get wound up about how much sleep you are getting or when you have it. Sleep when you need to not when you are used to or think you should. If you really feel like a nap , even if you have just got up , do it , it's what your body needs , just put on an alarm a few hours on to make sure you can still get on. A nap in the day often gets rid of that feeling of being " too tired" at night because you pushed yourself to be awake all day and increased your pain.
The muscle cramps may be reduced by adding a magnesium and potassium and Omega 3 supplement to your diet , I find garlic also helps ( as long as you can have it with your medications). At the moment your Pregbalin dose is still pretty low . I can only tolerate a dose a third of what the Pain Clinic wanted me to take , and even that third is 225mg , so you can see the difference.
The Pregbalin can add to your brain fog at first , but you adapt to the change , that adaption won't happen until it and other pain medication you need are sorted to the right levels though . You are still in that transition period when Brain Fog is coming from Pain as well as Side effects .
Did write quite a bit- left it for a phone call then it disappeared! Just wanted to say that you have had some really good advice from some ,as PMRpro said, have walked the walk . I was looking back at my diary and seeing a very difficult spell this time last year of not being able to see well at all, couldn’t drive ( had cataracts in both eyes) I then developed peripheral neuropathy in one foot and the other leg, resulting in very little sleep because of excruciating pain. Then developed shingles and resulting shingles pain. It was literally one thing after another and I felt particularly desperate through fatigue and loss of sleep ( PMR Nov 2014, GCA Jan 2016) I did think things had reached an all time low but gradually one by one things started to improve. I was given Amitriptyline for the neurological pain and although like you I didn’t like the effects of it ( not feeling with it and generally fuzziness of head added to the already fuzziness of GCAPMR) I did gradually get used to it and started taking it early in the evening to negate some of these effects. Like you too when I added on the shingle pain to the peripheral pain my dose was not enough to control the pain. Although I didn’t want to, I did increase the Amitriptyline to control the pain. Once the pain was controlled and I had more sleep I did feel better to face the day.
What I’m trying to say is that although my circumstances were perhaps not half as bad as yours or others mentioned here we do have some inkling of what you are going through and it can get better and not to lose hope. The pain clinic seems a very good idea and I do hope that more positive things will come out of that and you can get onto a more even keel. Do let us know how you get on.
Thank you for your response. It does help to know that I'm not alone. Sometimes it is harder than others. I wonder if I am alone in the fact that I feel, inwardly, almost violent, when people say to me how well I look and therefore I must be fully recovered/better etc. Sometimes it is after the most painful night and I am feeling exhausted and just want to scream. My husband says it is because I just try and get on with things as I don't want to just think of being ill. I am a fighter. I nursed for 18 years and have seen people far worse off than me and I admired how some people managed to stay smiling and positive and I try hard to do the same. Thanks again for your support.
Yes I think many of us can associate with feeling absolutely rotten on the inside and folk saying how well we look or do we feel better now- almost like our time for not feeling ok is up!!
I think that there is a fine line between saying no you don’t feel well and just “ getting on with it”As you say you are used to, as a nurse, just ploughing on. Unfortunately with this condition that doesn’t work. You need to take care of yourself, you need to know that you have a serious systemic illness and may often need to rest and pace and that’s ok. You will improve but it takes time and patience. Others may never understand but that’s also ok. Just do what you can, ask for help when you need it, if you’ve had a particularly busy day plan a rest time around it either the day before or after. You can continue to be positive and smile but you are not superwoman and do need to run your life at the present time at a slower pace. That also is ok and you can give yourself permission to do this. All the very best. Jackie x
We had a conversation about that some time back and various people gave the replies they did/would like to give in response because they were so angry. Including:
"That's funny - you don't look stupid..."
"It isn't my face that's sick ..."
I'm sure Bee will tell you her gems!
Have they suggested Tocilzumab (Actemra)?
It is reserved for more complex cases and perhaps it is worth having a discussion with your Consultant(s)?
Thank you for your reply. No they have not mentioned Tocilzumab (Actemra) and I have never heard of it. I have been retired from nursing for 12 years at the end of this month so am well out of date with my knowledge. I will make a note and discuss it with my consultant and the pain team if I ever get my appointment!
Have you considered returning to the GP , explaining that you have had some improvement on the Pregbalin and you are tolerating it but it was not long lasting and your pain although helped us still not under control enough for you to sleep and asking if you could increase the dose , even by a small amount each day to allow you to cope until you get to the Pain Clinic. Even increasing to double your current dose , or just adding 25 mg to your morning and night doses may be what could help to manage the symptoms in the meantime.
It's worth asking.
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