Recently I posted and received great advice about tendinitis that I had developed in both Achilles since being on prednisilone and methotrexonate. This is still persisting making life very difficult. Doctor offered pain killers and rheumatology specialist nurse offered ibrufen!? and said its the steroids.
The main point here however, is that I am feeling quite low and wanted to bench mark with you to see if this is normal. PMRpro has recommended that I get a second opinion on my current state of affairs which I am working on doing.
I cancelled a trip to see a good friend last week so that my rheumy could see me for an emergency appointment - only to be seen then by a registrar. Basically on 25 mg Pred, 25mg Methotrexonate (2 months in), pregabolin (2 5 mg per day), 1 aspirin, omeprazonole. Folic acid every day except meth day (hair falling out).
I get temple pain every day (on a scale of 1 to 10 sometimes its a 3 sometimes its an 8 if I have been busy) and jaw pain towards 6 pm and any time if I try to eat anything raw (eg: apple).
With the lack of being able to walk due to Achilles pain I was feeling pretty low when I was speaking to the registrar who was reporting and getting advice from my rheumy down the corridor. I was told that tension in my neck might be causing the pain and a TMJ joint! (had that for 20 yrs) I felt as if I was being a malingerer because I am still getting pain and I shouldn't be and therefore wasting valuable NHS resources as I have had every test going. I was told I could reduce metho to 20 mg as my hair is falling out - and was told they would prefer me to reduce Pred faster now. I have been following PRMpro taper method myself. I began on Pred on Aug 13 2019. I am so tempted to go back to 60 mg to see if the pain goes fully!!!!
I do have a stressful job but know the difference between a tension headache and GCA pain and also TMJ.
For the Achilles I have been referred to foot and ankle clinic at the end of May (6 weeks in to this pain now) and also phsyio.
I have also been referred to dental hospital to TMJ specialist (used to wear a mouth splint a few years ago).
I also have tinnitus! Now that sounds like Westminster Abbeys bells on full chime at the moment lol as GCA has made it worse.
It was all a bit too much on Wed eve and crying was order of the day and I am generally a strong person.
I was doubting myself - asking myself if I am imagining the pain? Since then I have tried to get my positive attitude back and count my blessings and 'crack on' as there is no other way. I am full of bruises, facial hair, moon face, which I can cope with; the Achilles is debilitating but I bought sports tape and if anyone asks I injured myself running a marathon!! Does anyone know if it will go? It began 6 weeks ago - 2 weeks into taking methotrexate - now I am 8 weeks in. Is it the metho or the Pred? Or simply bad luck
Nine months into GCA and there seems to be a few mountains yet to climb!
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Fieldofdreams
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Oh dear................you are going through it and I am so cross this is happening to you, it is so unnecessary.
Other folk, hopefully PMRpro, Dorset Lady, Mrs Mails et al will be a long shortly. However here is my six-pennorth in my limited experience and knowledge and remember it is just my opinion:
1: methotextrate is a steroid sparing agent - useful if you have Late Onset Rheumatoid Arthritis.............does nothing for GCA.
2: Sounds as though by taking the metho - you are sparing yourself the full monty of the Pred.
3: The onset of Tinnitus suggests the current amount of pred you are on is not enough and is not enough if you still have temple pain and jaw pain - the pred should take these away.
That is what happens when you are on the correct dose. The results, not yet published of 'Your Ears' research show that it can appear with GCA - they should be out later this year.
4: Change your Consultant, book a double appointment with your - hopefully - sympathetic GP and take someone with you to help you fight your cornet - try and make the double appointment the last appointment of the day - then you won't feel guilty about making the next person wait.
5: Stop worrying about the money the NHS is spending on you - you pay in and we all pay in so we can help each other out. I paid in from 15 years old and never wanted my money back - had it back in spades and probably owe them a fortune.
6: Your down to 25mg of pred in 9 months, I wish...............read my story: pmr-gca-northeast.org.uk/st.... Your reduction is too fast and that is why you are still getting the symptons - the right amount of pred till they all go away - then slow reduction 10% at a time and only reduce the next time if you still feeling OK.
7: You could try Bowen for the Achilles.
Sorry it is a long reply but..........................
Dear jinasc, thank you so much for your message; yes, I forgot I have been paying in for about 35 yrs now I have read you story and smiled . Your start was so like mine!
I have had tinitus for about 12 years and have learned to cope , now I just feel 'inside my head' constantly. I have good GP but she thinks that steroids should help the achilles - until I told her her the steroid side affects..... I am now going to research Bowen too.
I wish I had upped my dose of Pred this week whilst I had a few days off - next week I work away from home again.. as Dorsetlady has said, I need to accept that I am 'poorly', but time off is not an option... but I have altered my work pattern and colleagues know that I am not 100% .... more like 20% some days. thank you so much for your boost! Warm spring wishes
You need that second opinion pronto - all you describe, including the tinnitus, is typical of GCA flaring. You are only 6 months in - GCA commonly flares in the first 18 months and the most common cause of the flares is reducing too fast and too far. You fit that.
And is sick leave an option? It may not be tension headaches but stress DOES impact greatly on the immune system and as a result on both PMR and GCA - I could sing a magnum opus about that! It is a serious systemic illness - and you need to behave like a poorly person for a while.
Thank you PRMpro. I have had tinnitus for 10 yrs and learnt to cope most days... I think I have flared a couple of times now... I am tempted to see what 60 mg for 3 days does? I am singing that magnum opus right with you.... I have a pressured job and when its good its really great but it does carry a lot of responsibility. I have a weeks holiday booked at the end of May... cant wait. I keep tricking my brain.. , just get this contract out of the way and it will be ok. Sorting second opinion out.
Totally agree with others, you need to change consultants - and maybe consider sick leave - that may not be easy - if I recall you are in a senior position.
But you do need to set some time for yourself, your reduction of Pred has obviously been too quick, and the inclusion of MTX has done you no favours.
thank you DorsetLady. Cant take time off at the moment but have a break booked end of May and altered my working pattern. Also looking at the second opinion.
Just wanted to say no wonder you are wobbling. It's a lot to process. The NHS is there for when you are suffering like you are. It's easy to feel guilty about using resources, terrible they make you feel that way (felt it myself when discussing head/face issues and I haven't got GCA?!?!). Feel better soon 🌻
I've got no sage advice to offer, but just wanted to say I'm sorry you're going through such a bad time. There's nothing worse than feeling you're not being listened to or taken seriously by medics - and it's so frustrating when you have to wait so long for appointments. I hope you find another consultant for a second opinion soon. As other folk have pointed out, you have paid into the NHS all your working life, so don't feel you're being a nuisance - it's what you are entitled to!
I hope things improve quickly - please keep us posted.
See if you can get some help for the muscular tension which may be contributing to your symptoms. I've a younger family member who many years ago sustained a head injury (workplace accident) and has since then suffered chronic migraine. Finally I got her to see my magic physiotherapist. She went unwillingly because, like you, she has a lot of work stress, in her case self-imposed as she's self-employed. Nevertheless she kept the first appointment and is now planning on regular appointments for the next little while. The first one resulted in her going home and not going right to work as planned but having a four hour nap, and she told me in the subsequent three night since the first treatment she has slept better than she has for years. The physiotherapist told her there was so much tension in her neck, no wonder she was having all these pain issues, and spent an hour working on her. My young friend also said this was the first treatment a physio had given her which didn't hurt. In other words, find the right person to give you the treatment you need. You may well have a GCA flare going on, but there may also be other issues which if sorted can contribute to your feeling much better, and also not needing as large an increase in pred dose.
Dear HeronNS, thank you so much for your thoughtful reply. I have had neck work done by a lovely physio which does help and I have one booked this week. I also have reflexology which I find helps. I too am self-employed and a lot a people rely on me so I have to learn how to moderate my work as best I can as no work = no income... Every little thing helps and today thanks to all the lovely messages on here it helps to get things into perspective and create a new plan. thank you
Hello. Lots of good advice there for a jolly difficult situation. However, apart from possible mismanagement problems I fear that the crux is that you want to “crack on” as you put put it. I do worry that in keeping the flag flying you run a big risk of ending up in a situation where your choices have been shut down. As has been said, GCA is serious but it is tempting to water it down to a list of symptoms to get rid of which is subtly different to truly realising what’s going on inside and therefore what’s at stake. Sorry, to be a misery guts.
SnazzyD thank you. You are right and not a misery guts at all but full of great advice and no, I haven't stopped since diagnosis and things still persist and now achilles... my body warning me.... have booked a holiday in 5 weeks time.. modified my work pattern and taking notice.... thank you again. FOD.
Regarding the Achilles’ tendon problems, I had them too and found that seeing a podiatrist helped if not completely relieved the pain. He made inserts for my shoes and suggested suitable footwear and exercises to relieve the stress on my tendons. In the end it turned out that my ankle problems were not PMR related but while I was on the path to finding the solution the podiatrist did help a lot.
thank you so much. I have an appointment with a podiatrist in three weeks time and have bought some inserts for my shoes to see if it helps in the mean time. good to know it wasnt PMR related. All best
I found that flat shoes were not good for my tendons but those with a slight heel or wedge were much better. I was told to avoid clogs and flip flops. I hope you feel better soon.
I sympathise with you, I had a similar experience with rheumatologist to start with, she kept querying whether I actually had GCA and giving totally unrealistic reduction targets, 5 at a time to 15 and then 2.5 to 7.5! Knowing no better I tried it with disastrous results!
In the end my husband decided we needed a second opinion so we consulted Dr Hughes privately who was lovely and confirmed GCA and gave a realistic reduction target. Until then like you I had started to doubt myself and got the impression the rheumatologist thought I was making it up.
I have bouts of tinnitus and jaw pain when I have a flare up coming, again rheumatologist waves this aside, but after 3 years I think I know what is happening.
I am on my third steroid sparer, azathioprine, which seems to work well with no obvious side effects. Methotrexate took about a month to bed in, my hair fell out and I felt completely out of it, thereupon rheumatologist stopped it. I stuck Leflunomide for about a week, the runs, numb feet to name but 2 dire effects! One has to stick at it but it must be very difficult if you are working, I was a self employed software engineer so I know what pressure is. I don't think you're moaning, I think you are impressive for working in a pressurized job with this horrible disease!
Thank you so much Cally for your great message. So good to hear similar stories. Thinking of giving up the metho. My hair falling out is really upsetting me now.... I feel 'out of' too thats a great way of putting it but pop in to my life to work but without any memory or way of engaging what I call my front energy focus and brain. Mood swings, up and down and angry.
Going to consult privately too. Still on 25 mg of pred.
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