Down to 4mg Pred for GCA and now serious tendon & joint pain, leg (vein) pain. Is it normal?

[Fieldofdreams]

Hi folks, please can I ask my long haul Pred friends if any experienced my symptoms when reducing and getting low on pred. I've done the tapering V SLOW (2.5 yrs down from 60 mg).

Ive have acute bi lateral tedonopathy which is still an issue with plantar fasciitis now too.

Now worryingly I am getting sudden deep pain in one calf and deep pain in my groin on the other.

My veins are very noticeable (my skin is very thin) but not varicose.

As a theatre director and choreographer I havent been able to dance for 2 yrs with tendon problem and in Dec I simply knelt down and pulled my thigh muscle above my knee. After 3 months i still cant stand up properly if i bend down. It's as if my ligaments where they connect to bones are compromised. I am used to dance injuries but this is not that.

My hips joints are not excessively painful after any short exercise (I do have arthritis in both) but after not feeling it too badly now it's back into over drive.

I realise the steroids may have been keeping the hip pain at bay but I feel its caused tendon damage and I dont know what to do. After being reduced to walking with a stick for nearly a year ( not using at the moment), massive mood swings, losing a lot of hair, and in the last 12 months my dear dad, and all of my work and career I wonder if i will ever be fit again physically and mentally.

I know there are people on here who have suffered so much more than I have and in the big picture I am v lucky. I just need a kick up the backside and get on with it I know but I was diagnosed aged 57 at the peak of my career and now feel and look 95!

I try to look on the bright side and go to my 'happy place' playing Bruce Springsteen VERY Loud with the roof of my car down. It makes me wanna dance...

Will this get better is my question.

Tons of love and thanks one and all.

[SheffieldJane]

I am sorry that you have had such a frustrating time and that you have lost your dear dad. We all know these times when we wonder if we will ever lead a normal life again. The pain and the limitations do grind you down what treatment are you receiving for the tendonopathy and plantar fasciitis ? Is physiotherapy helping you at the moment? Your mind and body have been through a lot you need to give yourself time to heal with a programme of progressive exercise and lots of time in your happy place with Bruce spurring you on. In the great scheme of things, you are still young.

[Fieldofdreams in reply to SheffieldJane]

Hello Jane, thank you for your lovely reply. I've been on physio exercises via zoom since last years lockdown and pain killers. Prior to that I had ultra sound and acupuncture. My physio in 2019 suggested I have platelet therapy injections but rheumy just sends me to physio. All best wishes

[Mary63]

I don’t have anything to offer you except I had three areas of tendinitis in my leg following total knee replacement. I sorted my own treatment by timing how long it took severe pain to come on when on my feet. 10 minutes.... so I used crutches and was only weight bearing for 8 minutes at a time. Tendon problems were completely better in a month. I remember all your early posts. You have had such a horrible time in the last two years, and I wish you all the best.

[Fieldofdreams in reply to Mary63]

Thank you so much Mary for your lovely reply. I hope your knee is good now. My mum had one and is awaiting a second.

[Mary63 in reply to Fieldofdreams]

My knee is pretty good now. I have played tennis on it. The tendon problem has not returned...thank god!

[SnazzyD]

My tendons and ligaments definitely gave up the ghost by the time I got to low doses. I think the high dose for GCA had an effect and perhaps the inflammatory Pred effect may have masked the pain. Anyway, I had trouble all over my body, pelvic attachments, forearms, neck, hands and especially Achilles. The latter I had already had resolved damage from antibiotics 14 years previously, which was probably still there microscopically. Over about 6 months it gradually resolved except the Achilles. For that I had to get help from a physio and podiatrist. They both attacked it holistically and making sure weakness in my hips, ankles, pelvic floor and thighs were addressed as this was also making matters worse. I had not realised how extensive the weakness was until they told me to make certain moves. Yes, it is so hard when you feel so broken when supposed to be on the path to imminent recovery. The last 7mg was debatably tougher with GCA than the high doses, with histamine rebound, tendons, poor and renal function, muscle deterioration and general bewilderment. It does get better.

[Fieldofdreams in reply to SnazzyD]

Gosh SnazzyD you've been through it. What I am experiencing sounds a little similar. I have podiatry insoles and cant walk properly in bare feet without Achilles and foot pain. One day I will dance again!!

[SnazzyD in reply to Fieldofdreams]

I found insoles alone didn’t help at all. The side muscles of the feet were so weak that sometimes foot pain was worse than the Achilles. I had to use a light resistance band and perform particular prescribed foot movements, especially side ones. I suspect like me, you’ve got old injuries that have been aggravated by recent events.

[Fieldofdreams in reply to SnazzyD]

Thank you SnazzyD. I've been doing the side ones too but the deep sudden pain is a worry. It's not consistent but when it happens it takes my breath away. I'll give it another couple of days and may ask GP. If I'd been on a flight I'd wonder about DVT but I've not sadly, just been pottering and doing prescribed exercises. Ho hum. GCA just keeps on giving lol. All very best

[SnazzyD in reply to Fieldofdreams]

Clots can happen even without the classic risk factors. Let the GP rule out the nasties and then you can start the road to rehab.

[PMRpro Ambassador]

Please get that pain in the calf checked out and make sure it isn't a DVT. It could be a muscle tear - how did it start?

What dose are you on now?

You don't need a kick and told to get on with it - you need sympathy and practical advice, It's enough feeling rubbish because of what you have had taken away without being made to feel it was your fault.

[Fieldofdreams in reply to PMRpro]

Dear PMRPro, sorry I've just seen your message. Thank you so much! Yes DVT did cross my mind. I'm now down to 4 mg and been here for 4 wks.

[Fieldofdreams in reply to PMRpro]

Sorry I forgot to say. I dont think it's a muscle tear. It literally started for no reason last Wed eve. I did a relaxation / meditation session and felt great. Then that night and since its intermittent but not going.

[PMRpro Ambassador in reply to Fieldofdreams]

I was about to cross the road and pushed off one foot as you do - and it was like a knife in the belly of the calf muscle!!! Doesn't take a lot but it doesn't half hurt! Only really hurt if I moved!

[Cats64]

Im sorry about your dad too, but amazingly interested in your story as after being on pred for 1 month I damaged my Achilles heel, I think it is ruptured and this happened on October 10th climbing into an ambulance for an emergency eye test. I am only just now going to see an orthopaedic specialist, it looks like this is just the start of it. I was diagnosed in September and I'm 64 I feel 95 too.

[Fieldofdreams in reply to Cats64]

I am so sorry to hear that. As you've just begun to take Pred I would it may not be the reason for the rupture but I dont know. My problems started after 5 mths on a high dose. There is a link though but not well researched. Ask for all the help you can. A soft boot helped me and night boots. But late though as it took 5 mths to be diagnosed and 9 mths to get boots! I was just strapping myself up until then. Good luck and as many on here might say, there is no easy quick answer! All very best

[Afwalsh]

Hi, I experienced calf 'knots' since I have been on Predinisone, mid Dec 2020, 15mg, now on 7mg. I thought it was a pulled muscle but I think it was low potassium level. Anyway, since I started eating 2 oranges a day, and lying down with my legs up the wall for atleast 10 min a day it has gone, Fingers crossed.

[Fieldofdreams in reply to Afwalsh]

That's brilliant Afwash. I take mineral supplements as I have become very allergic to oranges and grapefruit since being on Pred... boy do I miss them. Hope u are feeling stronger.

[Greensleeves]

You have been through a very trying and rough time . You don’t need any kicks up the backside , more like some TLC and sympathy . Your life has been turned upside down with awful health issues and you’ve lost your Dad too .

I can’t offer you any advice re : muscles and feet , other than to treat yourself very kindly, you’ll hopefully find yourself in a better place as these issues heal themselves over time and your health improves . I do think stress plays a huge part .

Enjoy your music , keep looking on the bright side. . Hugs to you xx

[Fieldofdreams in reply to Greensleeves]

Thank you so much Greensleeves. I spent the day in a park today tutoring drama students in the joy of Shakespeare. Armed with a chair, orthotics inner soles and pain killers I actually enjoyed a day out for the first time in 2 yrs! Positive mental attitude really helped cx and the support of everyone on here. This forum is a real life saver. Thank so so much.

[Greensleeves in reply to Fieldofdreams]

Glad you enjoyed a day out . The people on here are wonderful. Take care xx

[Fieldofdreams in reply to Greensleeves]

Hugs and love to you too. FOD x