Advice Please, I am in a terrible state.

[Orangecakes]

I am a mess.

I was tapering my prednisolone from 3mg to 2.5 mg using a reduction over 14 weeks, starting 19th September and was progressing nicely.

In November we travelled long haul UK to USA, journey no hassle, flights good. But, I did experienced emotional stress caused by a family upset while visiting which has hit very hard with me.

I was doing fine with the reduction until week 9, I decided to up my dosage back to 3mg because of upset; hoping to hedge off a possible flare. Going off reduction guide.

Week 11, I dropped back to 2.5 for three days out of the 7 days (week). Trying to get back to 2.5 mg.

Week 12, I alternated between 2.5 and 3mg for a few days.

Week 13, I went straight to 2.5mg for 4 consecutive days.

Until day 5 of week 13, when I experienced a bad flare on the 16th December.

I could hardly lift my arms, extreme pain in neck and shoulders, very low mood with crying. I tried paracetamol at first but had no affect, so believing that I was flaring increased my current dosage by 5mg to 7.5 mg.

The additional 5mg seemed to calm my emotions and alleviate some pain.

I add that since our return to UK on the 30th November and to date, neither myself nor my husband are over jet lag, our sleeping pattern is all over the place.

I have been 3 days on 7.5mg and my pain has increased, especially in my neck and shoulders. I have pain even upon my husband hugging me. I have not been eating well, I have a low mood, I lack energy and motivation. Sleep pattern out of whack. I am feeling completely under the weather. My neck and shoulder pain is extreme, very difficult for me to tolerate.

Today, although I have no faith in my local GP surgery I have asked for and received an appointment with doctor tomorrow and I am requesting a blood test.

I would greatly appreciate your advice, I have faith in you.

Thank you, Orangecakes

[PMRpro Ambassador]

Travelling on its own can upset the applecart - and adding in emotional stress in top when ou are at such a low dose is likely to have resulted in a good going flare. But I suspect there is a lot more going on than "just" the PMR and I think you probably need to consider you are clinically depressed - and more than adrenal insufficiency would account for on its own.

The "add 5mg" protocol is for a flare that has been caused by overshooting the dose you need while tapering. This, I think, may well be a proper "don't know where I am" sort of flare - and on top of all the rest, the time of year is a real rollercoaster for many for all sorts of reasons.

When you see a doctor tomorrow - let it all out, don't try to be brave or heroic. They need to understand how bad you are feeling.

[Orangecakes in reply to PMRpro]

Thank you for your response. Do you think 7.5mg is a good dosage for me to be at or should I add additional mg's?

[Orangecakes in reply to Orangecakes]

I add to my previous comment, the pain in my neck and my shoulders is excruciating, 7.5 pred isn't having any affect. Thank you.

[PMRpro Ambassador in reply to Orangecakes]

Difficult for us to say - under the circumstances I think I might try a bit more, maybe 10mg and if that makes a difference I'd be off to the doctor asap.

[Orangecakes in reply to PMRpro]

Thank you so much, this forum and your advice is so helpful and a blessing. I have an appointment with doctor tomorrow. 😘

[DorsetLady PMRGCAuk volunteer]

You can stay on the increased dose for 14 days, so give it a bit more time to take effect….and I agree with PMRpro on the adrenal issue and the fact you may have something else going on….

This gives usual advice for dealing with a flare - so see how that goes -and maybe step back to 5mg initially - re-evaluate at that point before you then consider going down to 3mg… or staying at 5mg. ..

healthunlocked.com/pmrgcauk...

[Orangecakes in reply to DorsetLady]

Thank you so very much for the good advice, I can always count on your and this forum. I printed off the information on "Is it a Flare..." and find it so useful. 😘

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Good .. hope you soon feel better-and hubby of course.

[Orangecakes in reply to DorsetLady]

Thanks again. You all are so kind and helpful.

[SheffieldJane]

Family stress heaped upon long haul travel is a real killer. Treat as PMRPro advises and hopefully your reaction will normalise. So sorry this happened to you.

[Orangecakes in reply to SheffieldJane]

Hi SheffieldJane, Thank you for your advice, caring and support. We do not do stress well with this illness that is for sure. I have upped my dosage this evening by 2.5mg this takes me to 10mg, plan to continue for 10-14 days. I will see how that goes, fingers crossed. Take good care of yourself.

[HeronNS]

You aren't alone! All the best with your appointment and keep in touch! 🌼

[Orangecakes in reply to HeronNS]

Hi Heron, Thank you so much for your support and caring, it means a lot. I have increased to 10mg taking another 2.5mg this evening, will continue on this dosage see how it goes. Thanks for well wishes for doctor tomorrow, hopefully I will get a blood test done as well. You take good care of yourself. Thanks again.

[purplesprouting in reply to Orangecakes]

Good luck at the doctor's tomorrow, I am here for you anytime, your poly friend,Xxx💕

[Orangecakes in reply to purplesprouting]

Thank you dear sweet friend. Take good care of yourself. Thank you for your continued support. 😘🙂 xxx💕

[Grammy80]

You have quite a bit on your plate and received good advice. Give yourself some time when you go to a different dosage, it is a bumpy ride. I have GCA (2019) take Actemra and this September had my pred at 1mg. Other health issues resulted in IV steroids in hospital,then 60, then 20, then 10, then 7.5 and in four days I shall attempt 5...I'm tapering per my rheumy.

I can relate to the emotions, fatigue and all that. I find it helps me to ride out the adjustment for a few days. Be kind to yourself...some days I sleep 16 hours. We'll be on the sunny side again....Take care 💞

[Orangecakes in reply to Grammy80]

Hi Grammy80, Thank you for replying, it is a bumpy ride, thankful we have each other and the Pro's for help and support. Thank you for your advice, support and caring. I hope things go well for you as well. We will all get through this. Take good care and be good to yourself. x

[Missus835]

Hi Orangecakes. While I can't add to all the wonderful advice given, I do wish you well with the appointment. This will settle. Hugs.

[Orangecakes in reply to Missus835]

Hi Missus835, Thank you so much for your well wishes and support. As you say things will settle, it is just getting to that point. This has been an awful flare but believe that I am now on the path to feeling better, by increasing my dosage and with the help of my PMR friends and the Pro's. I do certainly appreciate all the help and empathy I have received. Take good care of yourself. x

[agingfeminist]

family stress is the worst...totally knocks me off my perch...where I feel pretty wobbly at the best of times....lots of good advice here...especially check with doc about loss of appetite and low mood and lack of sleep...I hope you do feel better soon...

[Orangecakes in reply to agingfeminist]

Hi agingfeminist, Yes, agree family upheavals are the worse, so stressful. And yes with this illness we do have to try to keep balanced and avoid stress, unfortunately life isn't all roses. But how fortunate we are to have this forum for support, care and advice, it has been such a godsend for me. Thank you for reaching out to me. I upped my dosage yesterday to 10mg, I slept well, this morning my mood is better and I've enjoyed a delicious bowl of oatmeal. My aches and pains are settling. Things are beginning to look up again. Thank you for your caring. Take good care of yourself. x

[Griggser]

Hope the appointment with the GP goes well, don’t hold back and let them know exactly how you feel. I can really empathy with you’re situation and have just had to up my pred dose after trying to reduce below 10mg for the multiple time! Have the best Christmas you can🎅

[Orangecakes in reply to Griggser]

Hi Griggser, Thank you for your empathy. Such a frustrating illness, you think you're almost there and boom it hits you again. So wonderful to have this forum, the Pro's and all the lovely, caring people, like yourself. I really appreciate all the postings that all have made, it is like a big, comforting hug. Hope that you are doing okay. Take good care. You also have the best Christmas that you can. Life has to go on. We will get through this. 🙂

[Gimme]

Nothing else to add on the PMR front, you already have good advice there. Just to say, sorry that you are suffering so much and at a difficult time of year aswell. Family stuff can really knock you sideways, especially as there is usually a history to it, and then it triggers all kind of feelings that belong to all the other times it happened with them. Whatever is going on for you in your head, I would try to off load with a sympathetic listener and get it all out. If you don't have a wise friend, maybe you could consider a few sessions with a counsellor to help you sort out your thoughts. Don't bottle it up and let it hamper your recovery with whatever is happening with your PMR and don't feel bad if you need to find help with it. This comes from someone who has a family that like nothing more than a good drama and knows how much hurt it causes. Good luck with the doctor. Hope you find some relief.

[Orangecakes in reply to Gimme]

Hi Gimme, Yes, good advice on the forum, and I trust the advice. We are so blessed to have this charity and the forum. I do so appreciate all the nice, kind, caring posting, as I've stated before it feels like a big, comforting hug and you know you are not alone in your suffering. Thank you for your advice, I did chat with a very good friend yesterday , telling her all that has gone on. I was bottling it up, such a relief to have a true friend and a husband to lean on. This friend also has PMR so we know how it is. I too have a couple of members of our family that loves drama. All the best to you, hope that you are doing well. Thank you so much for posting, nice to share. Take good care of yourself. Thanks for well wishes with GP. 🙂

[MrsMarigold]

Hi Orangecakes. Your name is funny and makes me hungry. I have lupus and other AI conditions. I am on low dose of prednisone.

I know your PMR is treated with steroids. But I would like to offer a different perspective. Travel overseas is very difficult for me. Especially the time change. So much so that until the last 10 years I declined to do it. After I spoke to my doctor about it, she prescribed Valium and on the label it says “for flying”. This way I sleep on the flight and the time change with a Valium that night makes me ease into the next day. I do the same thing on the way back home. Valium was created as a muscle relaxer originally. It’s sedative effects discovered afterwards. I have neck and shoulder and arm neuropathy so I’m “familiar” with pain in those areas. I think the UK has different perspectives on these meds; Idk. This travel plan works well for me. Best, MrsMarigold

[Orangecakes in reply to MrsMarigold]

Hi MrsMarigold, Glad that you find my name funny, sorry that it makes you hungry. I like your name, it reminds me of the movie, The Marigold Hotel, in India, that I so much enjoyed, recommend it if you haven't seen it. Sorry that you have your illness's to cope with as well. Thank you for your different perspective, regarding taking Valium short term while traveling long haul, if ever I do another 'across the pond' journey I will certainly consider your suggestion. I like you, I do not know UK's perspective on this drug. I am so sorry to hear that you suffer neck, shoulder and arm pain, all pain is awful. However, I can certainly empathize with you currently. Here's to better times ahead. Thank you for posting and sharing. Take good care of yourself. All the best. 🙂