Update to symptoms dropping from 30 to 25 and weird visual symptom

[Mstiles]

Hello everyone

I’m so discouraged, will this ever get better? Since January when diagnosed I don’t seem to be getting any better, feeling and looking worse in fact. 40mg in Jan, to 30, 27.5 today. Once got to 25 but then got symptoms. It’s been 5 1/2 months.

I haven’t had any more visual symptoms but when I did see the rheumy last week to discuss what was going on it was the same old story...” these are prednisone symptoms not PMR/GCA.”

I had my typed list for her, made no difference. She glared at me, not listening. Well we need to do a biopsy then to tell”, a biopsy now? I’ve been on 40-30 mg for 4 months, one month on 25mg and a biopsy will show GCA?

She called my eye specialist who concurred it didn’t sound like GCA, and she offered to do a biopsy the next day! Now I’m totally confused and more distrustful than ever. Why would the eye specialist think this could show anything now?

I said I’d like to go slower on reductions, the rheumy didn’t agree, just said “it’s been over 2 weeks since you were to go from 25 to 20.

I just said “we’ll see how it goes”, as she was leaving. She didn’t, however, put the usual “if bloods are OK in 2 weeks reduce to 20” into the printed patient instructions like usual, so maybe that’s encouraging? But she wants to see me again in 2 weeks and I’m sure she will ask.

I see the eye specialist in 2 days.

I went to 30mg for a week or so, back down to 27.5 for the past 3 days. Some withdrawal symptoms.

I asked my sister to go with me next time. I couldn’t believe how scared, and upset and frightened I got, I was a real mess in that appointment

Meanwhile my hair continues to fall out, and I am so depressed, really in a dark place right now. I’ve struggled with depression a lot, been on meds several times. I’m really can’t see a way forward.

Lots of financial problems.

My sister is my only support, and I think she’s getting tired of it.

[Rosbud]

I'm so sorry you are suffering so

Much , I'm

Not qualified to give advice but am sending you huge hugs and loving support x

[CT-5012]

I’m not qualified to answer the medical questions either but you sound as if you are in a bad place right now so can only offer sympathy. I think your rheumy is less than interested in you as a patient, how dare she treat you in this way, she needs to see the bigger picture. If your sister can help then take her with you. My thoughts are with you and sending lots of virtual hugs. Keep on fighting, there is light at the end of the tunnel.

[HeronNS]

I don't know whether anything will show after four months on pred, but there was a study done which demonstrated that temporal artery biopsy could still show signs that GCA had existed in the artery after six weeks of treatment.

ncbi.nlm.nih.gov/pmc/articl...

Whether your medical team is competent to discover these subtle signs is another question. And there is always the caveat that the section biopsied was not affected even if GCA was present elsewhere in the vascular system. You are in your right to refuse the biopsy if you wish. I think I would, but I'm not in your shoes. Yes, ask your sister to accompany you. You really need her support right now, and love goes a long way to overcome compassion fatigue. I know you have financial problems right now, but maybe you could buy her a single rose or some similar small token if she would appreciate it.

[SheffieldJane]

Irrespective of the cause of your depression, I think it needs some separate attention. You do seem, understandably, to have slipped into despondency. You have talked about suffering from depression before and as a fellow sufferer, I know it needs to be nipped in the bud.

This is not to say that your symptoms and worries about the quality of your care are not real, they are, but you need resilience to keep on dealing with them. I agree with you about the pointlessness of a biopsy at this stage, I agree with you that a slow taper is the only way forward.

Your hair will right itself, mine has (7 mgs). That and weight gain are the most lowering symptoms. Have a frank talk with your sister about feeling like you put upon her. You might be surprised, being needed is a great thing.

[Mstiles in reply to SheffieldJane]

Thank you,... yes I feel my resilience has disappeared. Thank you for the encouraging words about my hair. It seems this is the thing that is really discouraging me I will try to talk to my sister. Always prickly about money

[SheffieldJane in reply to Mstiles]

My hairdresser took me in hand and gave me a clever layer cut and some low lights that gave the illusion of fullness. She now remarks on how much thicker it is. Like others on here I seem to have developed curls, makes a change from poker straight.

This prickly thing maybe coming from both of you for different reasons, you won’t know until you ask. I really hope things get brighter for you soon, you’ve struck a cord in a lot of hearts on here.

[Angiejnz]

I cannot believe the people that are in a position to help and who have signed the Hippocratic oath to cause no damage can treat others in distress the way you have experienced it. It's outrageous at a human level, what are they thinking/feeling (or probably not) that it's ok to talk like this to a vulnerable person. There! I have vented! I am so sorry you have experienced this, it's not ok. My expertise is in sending Hugs From Downunder so hold on, ones coming. Again in Maori they say Kia Kaha (key-ah car-ha) which means be strong 🐻🥝

[Hidden]

I am so sorry you are in this position with prednisone , doctor and depression. I was given a doc to see for my depression and it was a good thing for me. I only saw him for a short time but just knowing someone was really listening was a relief. As to hair loss I lost mine on methotrexate and now it is long thick wavy and my twin sister hates me because she has to perm hers. I am always the thorn in her side. my rhumy was very dismissive of me my last visit and I threw him a curve ball. this time I went in and said "I don't know what to do and I need your help.". It was an amazing appt. the last time I showed him what I wanted to do and he basically said fine closed my chart n left the room. Anyway I said all that to say he is going to look into if my medicare will pay for a scan of my arteries. he said it is better than a biopsy. It has been 2 1/2 yrs for me started at 50 when GCA came and joined pmr niw down to 12.5 which isn't anywhere near as bad as 20 and above. oh I know nothing about what kind of scan😷

[PMRpro Ambassador in reply to Hidden]

The only thing that will show anything now is the ultrasound scan that was compared with TAB (biopsy) - and what it should show now is if there is no sign of GCA in that particular bit of artery. jinasc has one done - nothing found and she tapered off pred despite her slightly raised CRP.

[Mstiles in reply to PMRpro]

Yes, I never had a TAB done at the beginning so I can’t see any point in going through that now.

[Mstiles in reply to Hidden]

Your hair looks great. I hope mine will again someday

[Hidden in reply to Mstiles]

I need to update my photo. My hair is now down to my shoulders. I kept it short when it was thinning so bad. 👀

[shazstep]

I feel for you Mstiles. I too think I was where you are at a few months ago. Today is a bad day for me but I have had 6 good days to get here. I have received so much support from this group over time. I never go to specialist appointments by myself. I don't have a lot of people in my day to day life, however, those I have I truly cherish.

I hope you see sunshine soon.

[Mstiles in reply to shazstep]

Thank you

[Hidden]

Please don't dispair. I was diagnosed with PMR/GCA Nov 2016. Put on 40mg Pred now only on 24mg after another flare. Yes the feelings are weird and my head feels like it has a tight band wrapped around it! If I knew then what I know now I wouldn't have had a biopsy which was negative anyway. We have to go with our symptons not necessarily blood test results. Sadly all the medics want us off the steroids asap and it doesn't work the same for everyone as we are all different. Battle on as they say but yes it is very wearing!

[Mstiles in reply to Hidden]

Yes very wearying. I read your posts and it seems we are both doing battle with our very insistent rheumys, The latest problems sound similar, wanting to taper too fast.

Hope you are feeling better and are able to work out a doable plan for yourself, not easy when feeling bad!

[Reeceregan]

I agree with rlake. I was diagnosed with PMRand GCA June 2017, and started immediately on 50mg prednisone. My GP treated my symptoms thank goodness, not waiting for test results, as I had eleventy seven symptoms of both! It took 6 weeks to see the rheumy who ordered a temporal biopsy...and he admitted that he expected a “false negative” result anyway because I had been on pred for so long. He was right, the biopsy showed nothing. Needn’t have bothered putting me through it. Did it change anything? Nope...I stayed on the 50mg for another 2 weeks because the treatment for GCA is high dose pred anyway. The biopsy will only show the giant cells they are looking for if they take the cells from the right spot, and the cells could be anywhere. When I did start the taper it was at the same dosage as you, each drop I’d stay on for one month. I also got stuck at 25mg and stayed on it for 6 weeks, then dropped again. When I got to 12mg I started using the DSNS method over a month and it has been the thing that has helped me reduce further. Just over 12 months later and I’ve made it down to 6mg, going to try 5mg in about a week. It wasn’t without problems on the way down either but I did it steadily and if I needed to go up a bit I did. And it wasn’t without a lot of hard work from me,but I just refused to let it get the better of me. I’m not out of the woods, and I’ve had some yuk side effects let me tell you, with other things going on as well that I now need injections for (osteoporosis) but don’t give up. And I’ve had depression in the middle as well, booted myself off to the doctor and gone on antidepressants to get me through the hump. You can do it if you set you mind to it and jump the hurdles as you get to them. You may stumble but don’t fall. 💪

[Mstiles in reply to Reeceregan]

Yes sounds similar. I was doing Ok for a few weeks at 25 but then had the symptoms plus a lot of stress. She didn’t agree they were symptoms. My rheumy wanted me to drop every 2weeks.

I’ve been on anti depressants before.

[Valnvaughan]

Hi

I think it would help your mood if you addressed your financial difficulties.

I volunteered at Citizens Advice for 13 years. They offer non judgemental, impartial advice on financial matters. If you can "see the wood from the trees" it helps put that matter in perspective.

Once you are not worrying about finance your mind will relax. To address your PMR / possible GCA try a course of Mindfullness ( I used a course from a book Mindfullness for Health ). A health professional who listens to you is gold dust, as is a sister and this forum.

There is no magic bullet for this condition. I have had PMR for 3 years, now complicated by a recent hip replacement.......but there is light at the end of the tunnel for me. And hopefully for you soon.

[PMRpro Ambassador in reply to Valnvaughan]

I think MStiles is in the USA and I don't think there is an equivalent of CAB in the USA - maybe some of the US contributors might know if there is?

[Mstiles in reply to Valnvaughan]

Thank you.

WHat is Citizens Advice? I guess you are in the U.K. I’m in the US.

Yes the financial part is really stressful, I have a very small social security retirement check, am 75.

[PMRpro Ambassador in reply to Mstiles]

"Websitecitizensadvice.org.uk

Citizens Advice (previously Citizens Advice Bureau and also known as Cyngor ar Bopeth in Welsh) is a network of 316 independent charities throughout the United Kingdom that give free, confidential information and advice to assist people with money, legal, consumer and other problems."

The advice varies even between England, Wales, Scotland and Ireland so can't help anyone outside those countries.

I wondered if there is anything similar in the USA but since I understand the law varies from state to state it will be a local charitable service I imagine if anything.

[Valnvaughan in reply to PMRpro]

From Internet. USA.gov website has a Dealing with debt section.

Valerie

[Valnvaughan in reply to Mstiles]

Yes, I am in UK. Citizen Advice is a UK not for profit charity that offers advice free to anyone who asks for it. I did an Internet search and there is similar help available in USA. Do not pay for help.

You can "Do it yourself" by honestly preparing a budget. Record income from any source. Record essential outgoings - rent, utilities, taxes, insurance, not debts. Hopefully, there will be some money left for 'living' , that is food, travel etc.

Only then look at any debt. If you have wriggle money try to pay off the higher interest debt first, with minimum payments to lowest interest debt. If you cannot service your debt at all it is best to get an adviser to negotiate for you.

At CA we helped many people every day and it relieved their feelings of hopelessness.

The medical difficulties will take as long as it takes, but actively doing something to ease your mind about finance is possible.

Best of luck. Valerie

[Mstiles in reply to Valnvaughan]

Yes, no wiggle room. I did find a volunteer non profit legal group to help file bankruptcy.

[Mike1964]

Hi Mstiles. I'm so sorry you're going through all of this, no wonder you feel so despondent. May I too suggest that maybe you need to address the depression as a separate beast, left alone it may well fester and grow. Are you able to speak to your GP about this? Also don't forget the Samaritans 116 123, they are available 24/7 to at least listen to you. Wishing you all the very best, Mike

[PMRpro Ambassador in reply to Mike1964]

I think MStiles is in the USA - so that number won't apply of course.

samaritansusa.org/

and the contact details are

"If this is an emergency, call 911. If you are in crisis or suicidal and need someone to talk to call the Samaritans branch in your area or 1 (800) 273-TALK."

[Mike1964 in reply to PMRpro]

Thank you Pro

[Mike1964 in reply to Mike1964]

You are so very welcome. Hang in there Mstiles, I know it's a tired old cliche but sometimes 5 minutes at a time is as long as we can manage, BUT, when you do that several times suddenly life has moved on a little. Again, wishing you all the best, Mike

[Mstiles in reply to Mike1964]

Thank you.

[Jackoh]

So sorry that you have to go through all this. Taking your sister is a really good idea and maybe having that chat with her to tell her how you really feel would help. There are a few things going on, with the depressive feelings, the financial difficulties, and what appears to be the Rheumy treating you as a number rather than a person. You will get through all this and you are so right to want to taper as your body allows. Perhaps as others have suggested - look at the depressive thoughts and address that first with perhaps your own doctor as that will have a knock on effect on everything else.Then you can have a go at looking at the financial and medical problems more easily. Do wish you all the best- keep us informed. Xx

[HeronNS]

Reading through the comments above, my thoughts: If you have trouble finding the kind of financial advice described, there are other agencies which can point you in the right direction. If I were in your shoes and had no idea where to turn I would first go to a church before a government agency to seek guidance. They may well be able to tell you what is available in your area. Another good source can be a public library. Locally, for example, our library maintains a list of community services. If we knew your state and community we might even be able to pull up information from the internet thousands of miles away, or my local reference librarian might.

[Hindags]

It is hard enough managing PMR/GCA ......to have to manage our medical providers too, when their advice seems ignorant of the standard guidelines ....too hard and unacceptable.

Sorry you have these new struggles to deal with.